# Doing Disney with Stage 4 Cancer



## Redwolf8812

Was wondering if anyone is interested in a thread like this - for patients and/or caregivers.  We could share tips, commiserate, etc.  I've been battling breast cancer since July 2010 and have enjoyed 3 trips to Disney World with my family since diagnosis.  It has its ups and downs and I always enjoy seeing my family have fun.  We live in Jersey and have always driven.  Last time, we took the auto train home.  I always wondered how others handle side effects of treatments while vacationing.

 Penny


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## LarryFmScotland

I think your advice would be welcomed by people who are helping people with cancer have a vacation, or have cancer themselves. 

I imagine that taking your time and finding moments to rest are important. One of the wonderful things about Walt Disney World is that you can forget your problems to some extent, there is nothing much to remind you of your day to day life.  I find that when I'm there I can relax, despite it being a busy vacation destination. 

My father passed away from cancer some 12 years ago. I wish I'd taken him to Walt Disney World with me, he would have loved it.

Regards Larry.


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## Pats Dragon

My twin sister was diagnosed with stage 4 breast cancer and went to DW a couple of times.  She was exhausted much of the time but she rented an ecv and carried a bag with all of her medicine.  Objectively she should not have gone but she had some wonderful moments with her grandkids which she wouldn't have wanted to miss.


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## lmc318

I would love a thread like this.  I was diagnosed in July with Cancer of an Unknown Primary, which isn't really staged, but is metastatic by nature, so at the very least it's stage 3.  We are planning a trip in November 2013.  I'm calling it my Survivor's Trip and I've invited everyone in my family to go.  So far my parents have said yes, for sure, and my sister and her family are a probably.  My brother and his family is a maybe.  DH's family are nos.  Not surprising.  They don't travel and MIL is on dialysis, so she won't go.

I've been to WDW several times, most recently in October of 2011, but never with cancer.  I know things are different now.  Mainly, I have lymphedema in my right leg (the cancer was found and so far is only located in the inguinal lymph nodes in my right groin, and it's causing lymphedema).  I'm going to therapy but after 4 weeks it hasn't helped much.  I'm hoping it'll reverse since I started treatment early on when I was still pitting, but I don't know.  At the very least, I'm hoping the compression stockings will allow me to walk the parks.  I really, really, really don't want to be in an ECV.  It would be great to get suggestions from people who have been through it, and I know they are out there!  Looking forward to coming back to this thread several times before November!

And best of luck and grace to all of us! 

Lisa


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## weHEARTmickey

Redwolf8812 said:


> Was wondering if anyone is interested in a thread like this - for patients and/or caregivers.  We could share tips, commiserate, etc.  I've been battling breast cancer since July 2010 and have enjoyed 3 trips to Disney World with my family since diagnosis.  It has its ups and downs and I always enjoy seeing my family have fun.  We live in Jersey and have always driven.  Last time, we took the auto train home.  I always wondered how others handle side effects of treatments while vacationing.
> 
> Penny



What a beautiful idea for a thread  My Mom passed away from breast cancer in August 2010. We had taken her to WDW in 2008 (before her diagnosis) & those memories and pictures are precious to us! She was Stage IV when I took her whale watching, for her Bucket List trip. It was pretty difficult, because she went downhill very fast (while we were on the trip.) I did have to push her in a wheelchair most places, and her appetite was tiny. She slept quite a bit during the end of our trip.

Even though we weren't in Disney, I would like to give this one piece of advice... Do the MOST IMPORTANT thing first! If it is your wish to have a family picture in front of Cindy's Castle at MK, then go to MK on the 1st day! You never know when extreme fatigue/illness may strike, and it would be so sad if you'd "saved the best for last", only realizing that the patient was too tired/sick to attend. We had debated on visiting San Francisco at the beginning or end of our Monterey, CA whale watching trip. I am SO THANKFUL we chose to go whale watching on our first full day in CA, followed by San Fran, because Mom declined after seeing those whales.  Prayers to all of you brave souls who are having to struggle through this horrible disease.


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## Redwolf8812

Lisa - we're planning a trip in November as well.  It's our favorite time of the year to go - the weather is pleasant, our teachers' convention is the week we go so the kids don't miss too much school, things are less expensive and less crowded.  Of course we realize everything is subject to change due to health issues.  In fact, the June 2011 trip had been rescheduled so many times I lost count.  LOL.  I see you live in the Philly suburbs.  I live in South Jersey but am treated at UPenn.  Where do you go for treatment?

We rented wheelchairs for me.  The first time we just got them at each park but then we got smart and rented one off-property ahead of time and arranged for it to be delivered to our hotel the day of our arrival and picked up our day of departure.  It was SO much easier and also less expensive.  With the wheelchair, we were able to do so much more because I didn't tire out as fast.  I walked when I felt up to it.  There were enough family members that they took turns pushing me.  No one minded - we had more fun since we didn't have to leave early on my account.

I don't have much experience with lymphedema at this point, but do you have to be careful with it if you fly?  With driving, we stop every 2 hours because I have to stretch my legs - some chemos can cause blood clots so it's important to get the blood flowing.  No big deal - we stop a lot anyway because someone always seems to need a bathroom break.

I try to avoid thinking of these trips as "my last one with my family".  Otherwise I'd stress myself out trying to take pictures and making sure we do EVERYTHING.  No one knows when their last vacation will be.  I try to stay positive and talk about "the next time we come back".  We try to stay relaxed about the whole thing.  Planning the trips gives me something to look forward to.

Right now we have a room booked at Bay Lake Tower but would LOVE to try to get a treehouse.  Either way, we'll have fun.

 Penny


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## lmc318

Redwolf8812 said:


> Lisa - we're planning a trip in November as well.  It's our favorite time of the year to go - the weather is pleasant, our teachers' convention is the week we go so the kids don't miss too much school, things are less expensive and less crowded.  Of course we realize everything is subject to change due to health issues.  In fact, the June 2011 trip had been rescheduled so many times I lost count.  LOL.  I see you live in the Philly suburbs.  I live in South Jersey but am treated at UPenn.  Where do you go for treatment?
> 
> I don't have much experience with lymphedema at this point, but do you have to be careful with it if you fly?  With driving, we stop every 2 hours because I have to stretch my legs - some chemos can cause blood clots so it's important to get the blood flowing.  No big deal - we stop a lot anyway because someone always seems to need a bathroom break.
> 
> Penny



Hi Penny - I hear November is an excellent time to go and I'm super excited!  DH and I went in December 06 for our honeymoon, and then my entire family went in July 09 (I will never do summer again!!).  DH, DD and I went in October 2011 and LOVED it.  DD was 3 at the time and we splurged and stayed at the Poly.  It was such a magical time and made it really hard to pick a resort this time.  In November, we're going to stay at Wilderness Lodge.  We decided the Christmas decorations at WL were too much to pass up.  I thought about BW, but I have Celiac Disease (in addition to cancer, so it's a joy), and BW has limited food options for me.  DD will be 5 when we go next and resort food is important as an option, so WL it is!

I'm being treated at Fox Chase Cancer Center, although I have a second opinion appointment at Penn in January.  I'm happy with my treatment - the nodes have gone down each time since I started treatment end of July - but with unknown primary, second opinions are always good.  It would be nice to know where this is coming from.  They seem to think gastric, although the upper endoscopy showed no signs of cancer.  I have no cancer in any organs that is visible to the naked eye or to CT/Pet scans.  It's just in my lymphatic system and right now confined to the right groin.  My pathology reports show CK7+ and CK20 focally +, so that is why they think upper GI.  I guess they think gastric because with pancreatic, I'd be in much worse shape by now.  I was kind of hoping for testicular, to be honest.    Much higher cure rate.  I don't think I'm eligible for that, though.  

I'll have to wear a compression bandgage, probably for the rest of my life and yes, definately on the plane.  Since I started treatment early and it's due to the cancer in my lymph nodes, we're hoping as the cancer goes down, the lymphoma will go down.  Have to get it under control first, though.  I've been doing therapy for 4 weeks and my calf is back down to normal size, but my foot and my thigh are not.  I'm going to continue starting 1/7 at Grandview in Sellersville, PA, which is much closer to me.  I'll be able to go more often for therapy there and hopefully get this under control.  It is uncomfortable, to say the least.  I'm supposed to be able to go about my business as usual with the bandages on, but it doesn't seem to be working well.  They fall down all the time and I don't fit into normal clothes with them on and eventually I just feel like a pig in a blanket.  The holidays were tough, to say the least.  

I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not.  During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see.  I'm still praying for remission.    If the lymphedema is under control by then, I'll be able to wear a compression stocking and keep the swelling under control.  They have bigger ones for bed time.  I hear they are awful, but whatever it takes to keep my leg a fairly normal size.  

If you happen to be at Penn January 15th let me know and maybe we can meet up quick for a cup of coffee/water/quick hug.  

Lisa


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## Redwolf8812

OK, will let you know.  The cancer is currently in my liver and I'm having an ablation on Monday morning.  After that, I'm not sure what my treatment schedule will be.  I just got done a clinical trial - the chemo was taxol and carboplatin, plus a pill that was either a placebo or a parp inhibitor.  Parp inhibitors are for cancer patients whose cancer is genetic, like mine.  

Ah, "remission", from your lips to God's ears!

 Penny


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## lmc318

Just wanted to share the great news!  I had my CT yesterday following my latest round of chemo and as of now, I am disease free!    I don't know how, but I won't question it!  I consider myself very, very lucky since they found the cancer when it was isolated to my lymph nodes and had not spread to organs.  I know it's not curable, but remission would be fantastic!  So one more round of three and I get a break from treatment!  

Of course, now I'm looking to celebrate while I can, especially since my birthday is in March, when I'd be done the round and have my next CT.  

Just wanted to share the great news!  Hope everyone is well!


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## Kellykins1218

lmc318 said:


> Just wanted to share the great news!  I had my CT yesterday following my latest round of chemo and as of now, I am disease free!


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## bitlerzx4

Dh is currently battling testicular cancer with metz to the lungs and brain (3x)  He asked me to book a cruise for Oct.  

I really hate Cancer!


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## Redwolf8812

Thank God for your great news, Lisa!

Bitlerzx4 - hating cancer with you. I hope planning the cruise is a good distraction. 

Hope everyone is having a happy and healthy Christmas season. As usual, the holidays came upon us too fast and are going by in a blur. 

I'm so grateful to God for our faith.  I know that I will face Judgment sooner then later, but I know that I will also be forever in the presence of the One Who Loves Me Most. 

So Monday - the ablation is still scheduled for 9am. I think it'll take a couple of months to find out how successful it was, and in the meantime, I believe the oncologist wants me back on chemo.  I've enjoyed these last few weeks without chemo and thank God for the nice break. But it's time to put the armor back on and get back into fighting mode.

- Penny


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## GoofyGraham

I do hope it's okay to post this... An experience, an encouragement, a survivor story? You choose. 
I wasn't aware that during my last Disney trip for my 50th birthday in September 2011, I had an undiagnosed bowel cancer. The tumour was found on 1st November and I had surgery on 5th December that year leaving me with a loop ileostomy. 
I have been unbelievably lucky, the ileostomy was reversed in February, went back to work in March and was able to work right through 7 months of chemo. 
Each time I went to the chemo ward, once every 3 weeks, I got reminded how lucky I was and told all of my friends and colleagues. There were many people suffering far more, better and far braver people than I. 
I've been told that they think my cancer is all gone so I've booked a WDW trip in April to celebrate with my son and partner. 

My thanks go to all of the medical teams, from my GP to the oncology dept and all points in between for saving, or at least extending my life. 

I wish all sufferers and carers well, and wish you all the success in fighting it that I've had so far. 
Whilst there are no certainties in life, dreams and wishes do help, and DIS and Disney have them in abundance.


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## lmc318

bitlerzx4 said:
			
		

> Dh is currently battling testicular cancer with metz to the lungs and brain (3x)  He asked me to book a cruise for Oct.
> 
> I really hate Cancer!



I'm so sorry to hear of your husband's diagnosis. Just tell him to keep thinking of Lance Armstrong while he's fighting, who also had mets to his lungs and brain. And look at him now!  (Aside from the doping scandal, of course!). I think booking that cruise is the perfect motivation. It's the exact reason I planned a Nov 2013 trip when I started treatment. Please vent, cry, share joy with us as you feel up to it. As a caregiver, you're going to need support too. Find it where you can. Hugs to you!!!



			
				Redwolf8812 said:
			
		

> Thank God for your great news, Lisa!
> 
> So Monday - the ablation is still scheduled for 9am. I think it'll take a couple of months to find out how successful it was, and in the meantime, I believe the oncologist wants me back on chemo.  I've enjoyed these last few weeks without chemo and thank God for the nice break. But it's time to put the armor back on and get back into fighting mode.
> 
> - Penny



Penny, thank you!  I wish you best of luck tomorrow and a speedy recovery. Keep us posted when you can. My thoughts will be with you. 

GoofyGraham - great news!!  Survivor stories are always encouraging to me, they help me fight harder. Have a great trip and enjoy it!!!


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## lmc318

Kellykins1218 said:
			
		

>



Thank you!!!!


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## PatsMom

This thread is the first time I've come across someone else with an unknown primary! Of course, its only been a few weeks since I was diagnosed with that! I have been battling bladder cancer since 2010 but was staged at T1, but high grade. So I had follow up chemo after tumor removal from the bladder. All the protocols were followed - a second staging was completed just to verify no muscle invasion. All looked good. I have had one bladder cancer recurrence which is quite common - staged at T0 but that was just through observation, not biopsy. They fulgurated the tumor (burned it out) right in the doctor's office. Seemed like the quickest way to get it done at that time and no reason to think it was anything other than a recurrence. Bladder cancer has a terrible recurrence rate.

A few weeks later I had terrible abdominal pain. Finally went to see my primary care who ordered an emergency CT scan. She was thinking pancreatitis from my diabetes medication or possibly gall bladder. What they found were para-aortic lymph nodes so enlarged they were causing pain by pressing on the aorta. At this point, most assumed a lymphoma. At about the same time the inguinal lymph nodes became inflamed and a biopsy was done from the left inguinal lymph node. It did not confirm lymphoma and was so poorly differentiated that they could not tell where it had metatastized from. There was speculation that it was gynecological.

So off I went to the gyn oncologist, who is excellent! Very good credentials and highly recommended. He did all of his tests and exams and didn't see any proof that it was ovarian or uterine. But after much discussion among oncologists and urologists it was decided that they should definitely rule out gyn cancers before deciding on a chemo. So this week they removed the uterus, fallopian tubes and ovaries. I came home to recover yesterday. The gyn onc things bladder cancer is the root, uro thinks gyn. They took lymph nodes from the belly hoping to get more information from those as well. We'll get the pathology report next Friday.

I am going to Disney next Sunday, two days after the pathology report! And I guess this is at least stage 3 at this point. Maybe not four yet since they don't see it in my bones and the MRI of my brain isn't back yet. Not my first Disney cancer trip though. I've been several times during bladder cancer treatment. Took care to avoid close contact where possible, washed my hands a lot and had no issues. Last May had a wheelchair trip because of a broken foot but my chemo wasn't that brutal for bladder cancer and I was able to do all my usual stuff.

This trip will be different. Doctor is OK with the three hour flight but definitely no Tower of Terror for me this trip! Avoiding all the coasters and jerky rides. We have a wheel chair from the last trip and are taking it. Thought about an ECV but I will be alternating walking and riding. I need to walk some, but not ten miles a day! We thought about cancelling but this is a big family trip we have been planning for a while. My step-daughter and five year old grandson are going with us. His first trip. And we decided to take my niece so he would have another young chld to enjoy the trip with. My 21 year old daughter is going too. Hard to get six schedules to agree! And the kids have already arranged to be out of school. So we are going and we figure we will have a good time even with my limited mobility. I won't start chemo until we return so that will help with the exhaustion. Surgical recovery is bad enough. Not to mention that there is really nothing they can do for pain but medicate me with narcotics. Pain won't get better until they can treat the cancer.

To all who are on this journey either on their own or with a loved one, you are on my prayer list automatically!


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## lmc318

PatsMom said:


> This thread is the first time I've come across someone else with an unknown primary!



OMG SHUT UP!  They say unknown primary isn't all that rare, but as you know from experience, we are few and far between!  You are only the second person I've "known" with CUP (never having officially met anyone face to face with it).  I don't know how much research you've done on it, but having it only in the lymph nodes is a BIG plus.  It's one of the good markers for treatment.  The other woman I know with it is being treated for pancreatic.  She has all the signs of it without an actual tumor.  Not good.  Pancreatic was my biggest fear.  My pathology reports point to upper GI in origin.  I'm 42 years old with a 4 year old.  I have a lot to live for, as we all do.  Anyway, through biologic testing, they basically ruled out pancreatic.  I had an ovary and tube removed and a D&C and there was no cancer anywhere but my right inguinal nodes and the retroperitoneal nodes.  After the first round of chemo, everything had gone down.  After the second round, the report says disease free.  They are treating me for gastric cancer and I'm on carboplatin, docetaxol, and 5-FU.  I started on cisplatin instead of carboplatin but I was so sick for 2 of 3 weeks between treatments that they switched me.  The carboplatin doesn't make you as nauseous.  I was afraid it wouldn't be as effective, but clearly it is!

They looked at me for bladder cancer as well.  They thought the original pathology showed bladder or gyn, but that doesn't seem to be it.  Although I had an upper endoscopy as well and it was negative.  I hope they find the origin for you, but just in case, I would have the biological testing done.  They can find out what kinds of treatment you'll best react to.  Mine showed my current treatment to be the best, so I guess my docs know what they are doing!  The report also gave some good options if and when I start to reject the current therapy.  

I was out for a good 2 weeks after my ovary and tube were removed, so more power to you for going so soon after your surgery!!!  Have a great time!


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## Redwolf8812

Goofygraham - so inspiring!  Thanks for joining us.

Patsmom - praying right along with you.  Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny


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## Redwolf8812

Goofygraham - so inspiring!  Thanks for joining us.

Patsmom - praying right along with you.  Please keep us posted on that path report.

Hope to post tomorrow night after the ablation.

- Penny


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## MdMommy

Hi!  I was diagnosed with metastatic breast cancer (stage IV) in Sept. 2008.  This was 5 years after I was diagnosed with my primary breast cancer.  I went to WDW in 2009 before I started chemo (was on Femara then Faslodex before chemo) which was pretty much like any other trips I had taken.  I went again in 2010 after a year on chemo (Taxol & Avastin).  Had to rent an ECV that trip due to fatigue, but still managed fairly well.  I am planning my next trip for July 2013.  After several years battling the cancer and undergoing chemo, I don't get around as well and suffer not only from fatigue but also from shortness of breath and pain.  I will be renting an ECV again.  This trip will be a little different.  My mets first appeared in my lungs, but now are also in my liver and some of my bones.  Due to the risk of fracture, I will need to skip any jarring roller coasters this trip.  I will just send my 2 teenage daughters on those rides without me.  Hopefully, my condition doesn't worsen much between now and the summer.  I have my next PET/CT scan sometime in January and we will see if the current chemo (oral Xeloda) is working or if we need to change.  But, I will keep planning for the trip and will adjust what I am able to do if necessary.  I love going to WDW and making memories for my daughters.


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## Redwolf8812

Welcome, MdMommy.  Please keep us posted about your upcoming scan.  Praying for you.

Had my liver ablation yesterday morning.  Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.

Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.

I am so blessed!


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## PatsMom

MdMommy, welcome to a group you wish you didn't have to join! I am always interested in reading about how others are coping with a "normal" life activity such as going to Disney. Seems like since stage 4 can go on for so long that it just doesn't make sense to sit home and wait to die. I may as well enjoy my good time and hope that they medical people keep coming up with things to extend that good time.

We are expecting the "dirty looks" whan I arise from the wheelchair and walk for a mile or two. Certainly nothing "looks" wrong with me at this point. But I had a total hysterectormy on Thurs and am leaving for Disney 9 days later on Sun the 6th of Jan. I'll be walking, but not Disney distances. My daughter and husband plan to take a break in the chair when I am not using it. So I have steeled myself to ignore comments of "faker" and crap like that.


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## MdMommy

Penny,  glad to hear that the nausea and pain are subsiding and that you have such thoughtful friends.  Sometimes it seems that the treatment for cancer has worse side effects than the cancer itself.  

PatsMom, yes it is possible to live with stage IV for years (I was diagnosed over 4 years ago).  I refuse to give up on living until I actually die.  Although, I am more limited now in what I can physically manage.  I was fortunate enough to see my oldest DD graduate from high school last May.  I would love to see my youngest DD graduate in a couple of years.  My youngest DD is 15 and she asked if we could go to Disney World this year in celebration of her sweet 16.  We won't be there for her actual birthday (February so not possible due to school), but we will celebrate her being 16 when we go in the summer.  I have to have the ECV because I get short of breath just walking short distances.  I don't worry about what other people think.  No one ever said anything to me when I used one before and I didn't notice any looks.  Just do what you need to do to have a good vacation.


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## lmc318

Redwolf8812 said:
			
		

> Welcome, MdMommy.  Please keep us posted about your upcoming scan.  Praying for you.
> 
> Had my liver ablation yesterday morning.  Tumor grew a little between last scan and yesterday's ablation. I called it a *******. The doctor called it a "burned *******". I was in there for about 2 hours. He had to use a CT scan to see it because it was hiding from the ultrasound machine. He also had to cook it a little longer. I came out of there drenched in sweat! Nausea & pain are starting to subside.
> 
> Came home to find the my bedroom decorated with lights, balloons, & cards, compliments of some friends.
> 
> I am so blessed!



Good to hear the side effects are subsiding. And what a homecoming!!  Rest up!

Happy New Year all!


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## bopper

lmc318 said:


> I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not.  During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see.  I'm still praying for remission.



May I say OMG you have cancer so it is OK to use an ECV.
Don't think of it as "I am so bad off that I have to use a wheelchair" but
"I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"


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## lmc318

bopper said:


> May I say OMG you have cancer so it is OK to use an ECV.
> Don't think of it as "I am so bad off that I have to use a wheelchair" but
> "I feel well enough to go to WDW and I am going to use this tool (wheelchair) that will let me have even more fun!"



Oh, thank you!  I know, I should feel ok about it and revel in the fact that I can go at all.  I still don't like the idea.  I'm VERY independent and head strong.   But I won't ruin the trip out of stubbornness, so if needed, I'll rent one.

Started round three today - treatment #1.    I'm exhausted.  Not only did they give me aloxi, which makes me sleepy, but I was up at 5:15 to get ready for a 7AM treatment.  Didn't get in until almost 8, but I had one of my favorite nurses, so it was worth it.  They're trying to get in all the treatments missed over the holidays, so it was packed in the infusion room and waiting room.  Actually, mostly the waiting room.  The infusion room seemed about 1/2 full.  Don't know what the hold up was.  There were plenty of staff members.  

Anyhoo, 1 down, 2 to go!  Woohooooo!


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## DCDisney

My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer.  Very scary with lung, pancreas, and lymph nodes all involved.  1st set of chemo didn't work but halfway through a new type and hoping for some improvement.  I so want her to get healthy enough to be able to take her kids to WDW.  I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc.  We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs.   It's just a really awful thing in general and esp with pancreas.


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## lmc318

DCDisney said:


> My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer.  Very scary with lung, pancreas, and lymph nodes all involved.  1st set of chemo didn't work but halfway through a new type and hoping for some improvement.  I so want her to get healthy enough to be able to take her kids to WDW.  I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc.  We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs.   It's just a really awful thing in general and esp with pancreas.



I'm so sorry to hear this news.  My heart breaks for her and you and the family.  CUP sucks in so many ways, especially because they don't exactly know how to treat it and it's pretty much a guessing game.  I'm very aware of how lucky I am even to get this improvement for now, even if I never go into remission.  With lung and pancreatic being the top two types of eventual types of diagnosis for CUP, it makes me very happy to hear things like Obama just singing into law funding for priority research for the most deadly cancers, lung and pancreatic being the top two.  

Do what you can with her.  Work aorund chemo.  Once you get a set schedule down, go.  Even if it's just for three days and she's in a wheelchair, it will be something she and her little ones will always have.  Make memories for her and for you and for them.    I can't give these enough.


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## lmc318

I was thinking that we've gotten a pretty good response here, so maybe we should start a DIS Survivors and Givers group.  Kind of like DIS Dads did for all dads, this would be for anyone who has had, is battling, or is helping to fight for someone with cancer.  What do you think?  It would be great to get and give suggestions from and for all kinds of experienced survivors and care givers.


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## PatsMom

DCDisney said:


> My 38 yo Sister with 2 toddlers was also diagnosed with unknown primary this Summer.  Very scary with lung, pancreas, and lymph nodes all involved.  1st set of chemo didn't work but halfway through a new type and hoping for some improvement.  I so want her to get healthy enough to be able to take her kids to WDW.  I was trying to think f ways to conserve energy but have great experiences so I was thinking character meals, fireworks cruises,etc.  We won't be able to preplan b/c of chemo schedule and varying levels of pain and feeling ill so I hope there will be some way to get some pixie dust to make ADRs.   It's just a really awful thing in general and esp with pancreas.



I am so sorry to hear about your sister. One of the blessings I count when I am not feeling so good is that the cancer remained away until my daughter turned 21. She will graduate from college this spring so I am most likely going to be there for that. Two toddlers would be heart breaking. 

The docs doing chemo are usually willing to work with you for vacations and things. Especially when the prognosis is a bit grim and making a huge family memory is involved. A wheelchair or scooter will help with stamina - just make sure to get up and walk sometimes! You really get even more sore sitting all day. If you go off season and don't need to eat at prime time, ADR's for character meals should be doable. We are doing dinner at Chef Mickey's this trip and breakfast at Tusker House. My grandson's first trip and we figured this way he would meet some of his top characters without waits. If you have girls, consider Akershus for a princess breakfast instead of Cinderella's. Much easier to get!

The pain sucks the worst. People dont' realize that cancer hurts. They understand when you are in pain from surgery or something like that but don't realize that just having the cancer hurts. The pressure my lymph nodeds put on various body parts causes intense pain. And your sister probably doesn't want people to know how bad she hurts - you do get tired of people asking how you feel. I'd rather have them ask me what I feel like doing! Don't know why but that makes a difference.


----------



## Redwolf8812

lmc318 said:


> I was thinking that we've gotten a pretty good response here, so maybe we should start a DIS Survivors and Givers group.  Kind of like DIS Dads did for all dads, this would be for anyone who has had, is battling, or is helping to fight for someone with cancer.  What do you think?  It would be great to get and give suggestions from and for all kinds of experienced survivors and care givers.



Sounds good.  How do we do it?  And can we get the words "stage 4 cancer" in there somewhere?  I ask because I've seen groups for other cancers/other stages.  I'd like this one to be unique.  I think we battle some very different emotional and physical issues.

 Penny


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## lmc318

Redwolf8812 said:
			
		

> Sounds good.  How do we do it?  And can we get the words "stage 4 cancer" in there somewhere?  I ask because I've seen groups for other cancers/other stages.  I'd like this one to be unique.  I think we battle some very different emotional and physical issues.
> 
> Penny



Well if we're going to keep it to stage 4 cancer then I think this group is good. I was thinking of expanding as I haven't seen more than a few threads about going with cancer at all. Since even stages 3 and 4 have a wide range of needs I thought we could get some new perspectives. I'll search for the other groups you refer to, though. I haven't seen much. 

How are you feeling Penny?


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## Redwolf8812

lmc318 said:


> Well if we're going to keep it to stage 4 cancer then I think this group is good. I was thinking of expanding as I haven't seen more than a few threads about going with cancer at all. Since even stages 3 and 4 have a wide range of needs I thought we could get some new perspectives. I'll search for the other groups you refer to, though. I haven't seen much.



I just thought stage 4 was a little more sensitive with our own set of issues but you're probably right in expanding it to other stages.  I've seen a breast cancer survivors thread somewhere here but I don't know if its members are currently going through chemo and I don't recall seeing stage 4 members on there.  But I could be wrong.  Whatever everyone wants to do is fine with me.  I'm just so glad I've found other stage 4 cancer patients who still enjoy Disney.  I may let others know about this thread - those I've met on breast cancer chat sites.



- Penny


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## Redwolf8812

lmc318 said:


> How are you feeling Penny?



Thanks for asking. Still in some pain and nausea, not surprising considering how much burning went on and how close he got to the gallbladder.  Waiting on biopsy results and then scan on Feb. 6th.

 Penny


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## dizprincess27

Hello All - I just wanted to share my experiences with you if your interested.  I have stage 3c Ovarian Cancer and was initially dx in Feb 2011.  I went through a horrible hysterectomy surgery and 2 subsequent hospitalizations and was treated with carbo/taxol/avastin for 6 rounds finishing in July 2011.  I immediately began to plan my December 2011 Christmas trip.  Unfortunately, after booking my trip, I began to suffer dreadfully from the side effects of the chemo.  I had to have plugs put in my eyes due to severe dry eye syndrome, I had neuropathy in both of my feet and severe pain in my upper extremities due to the chemo.  Luckily, my feet survived the trip and I had an absolute blast.  I did however get a GAC card which helped with some of the waiting for rides.  I went for approx 10 months and found out that my disease was recurring and alas I have restarted chemo this past September but guess what?  I went to WDW again in October with a friend and what a wonderful trip it was.  It was a trip of firsts as we were lucky enough to see the new MK area before it was officially opened, I went to my first party MNNSHP which was awesome and I also went to the food and wine festival so a happy girl I was.  Can't wait to plan again but I'd like to be done treatment again because I am very tired and want to enjoy it not being so lethargic.  I wish you all the best and I am all for going to the happiest place on earth it's def therapeutic!!


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## jacksgirl

Thanks for this thread Redwolfe. Lanagraves from BCO here. Looking forward to our next WDW trip in September.


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## LaurenS

Disney World is one of my favorite vacations. Actually Disney World in October 2011 was one of the last places where I felt well. As soon as we came home, I started getting sick and I was finally diagnosed with stage IV breast cancer with mets to the vertebrae and lungs in April 2012. I'd love to go back to Disney soon, but I've blown all my vacation time on hospital stays and am blowing all of our vacation money on medical expenses and college costs for our oldest!

Last trip, we had my mother get a wheelchair due to some issues she was having with medication interactions. I just can't imagine ME having to get a wheelchair next trip, but I know I just don't have the stamina or speed for walking at Disney. 

Hi Redwolf  I followed you here from breastcancer.org.


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## Redwolf8812

Hi Julie and welcome.  Keep us posted on you.  My mom had ovarian - I know it's no walk in the park, no matter what the stage is.

Lana & Lauren - you two are too cute!


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## MdMommy

Thought I would share.  I had my PET/CT scan earlier this week and have heard back from my doctor.  Everything looks stable for now!  So, I will continue with my current treatments for now.  I will probably have one more scan, possibly two, before my vacation this summer...I get scans every 3-4 months.   Hopefully the chemo keeps working.  But for now, I am happy with the test results and can have fun planning for my summer vacation at Disney World!


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## PatsMom

Hello all! I am just back from Disney. This trip was a lot of wheelchair because I was only 10 days out from a total abdominal hysterectomy. I did OK. Walked a mile or so a day. Usually at the end of the day when the kids were tired. We'd corral them into the wheelchair so we wouldn't lose them when walking in a crowd at park closing. Only did closing once and that was after Fantasmic. But the five year old was pretty beat at the end of the day and loved the ride. So I suppose some people thought I was that "miraculous" wheelchair cheater who rose from the chair as needed and was getting to the front of every line! Wish they knew what a pain it is is to be stuck in the chair and to have to deal with it everywhere.

Cancer pain was tolerable. I did have talks with two doctors while there. My uorlogist called to tell me that he believes I do not have metastatic bladder cancer - he reviewed everything and had it reviewed by others as well. He thinks perhaps breast cancer from the immunohistological staining. My primary called because she reviewed my medcation history and is concerned about the amount of Vicodin I am taking - too much acetaminophen. She isn't worried about the narcotics since she said pain control is the issue now. So I get a prescription today and will be taking MS Contin which is morphine in a pill form. It is long lasting and I will take the Vicodin only for breakthrough pain. 

Going back to work this afternoon. Saving what I have left for paid time off for chemo. Sucks to not have short term disability but at least my job isn't physically strenuous and I can work from home a few days a week.

I thought of all of you when I was on vacation! Healing wishes to everyone.


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## Redwolf8812

MDMommy -  So happy for you!  I continue to pray daily for miraculous healings for all of us.  

Patsmom - Sounds like you had a great time.  I used to get out of the wheelchair to stretch my legs and let the kids ride it.  They were 15 and 8 at the time and would actually fight over it!  I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.  

- Penny


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## PatsMom

Redwolf8812 said:


> MDMommy -  So happy for you!  I continue to pray daily for miraculous healings for all of us.
> 
> Patsmom - Sounds like you had a great time.  I used to get out of the wheelchair to stretch my legs and let the kids ride it.  They were 15 and 8 at the time and would actually fight over it!  I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.
> 
> - Penny



I think I got fewer "looks" on the day I was wearing my Cancer Sucks T shirt! When we go in May I will be wearing a headscarf since my hair will be long gone by then. I suppose that will help. I just keep remembering what my mother always told me - you'll never see these people again so who cares what they think!

I also continue to pray for miracles for all of us. I am doing the Relay for Life again this spring - my little gesture of help to find a cure. I don't know how much walking I'll do but I will be supporting the team in fundraising.


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## lmc318

MDMommy, woohoo!!!!  Congrats and good vibes for continued good results!

Pats mom - I'm glad you had a good trip !  I agree it's easier said than done to ignore people's looks. Shame we feel we need to show our pain or need to others so they will be more accepting. People should be more tolerant, but of course it's hard for all of us. Hope work is going well.


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## stargazertechie

lmc318 said:


> Oh, thank you!  I know, I should feel ok about it and revel in the fact that I can go at all.  I still don't like the idea.  I'm VERY independent and head strong.   But I won't ruin the trip out of stubbornness, so if needed, I'll rent one.



That's a great attitude to have! My father was a 5 year cancer fighter, dx with Stage IV esophageal cancer in 2007. He was terminal, end stage when we went in November 2011. It was honestly the BEST week he had from August 2011 through his death in April 2012. 

At the time of our trip, he had been receiving chemotherapy for 47 weeks straight  and had 30 or so radiation treatments scattered in there as well. On the good days he was out in his wood studio working with heavy machinery. On the bad days he had to crawl down the hallway to his bed, and mom and I had to lift him into it 

He was reluctant to rent a scooter. He didn't want to look "disabled". I knew he'd embrace it eventually, so I rented one behind his back 

I also had a wonderful person on the DISign board make a license plate for the front that said "Lou's Ride" and for the back that said "Cancer Can't Stop Me" because on his good days, he LOOKED normal and I wanted to avoid "those comments". 

Since we were going for the Christmas celebrations, I bought a few cheap things of garland from Wal-Mart, along with battery operated lights. I just looked through *all* of my photos and realized I didn't get a good picture of his wheels at night. Though here it is during the day






Good luck to all of you in your cancer journeys, and I hope that you all achieve a lifelong remission and have many good years ahead with your families, friends, and loved ones! If anyone has any specific questions on doing Disney while wrecked from treatment , I'd be happy to share what we learned!


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## dizprincess27

Thank you for the welcome Redwolf8812 and you are so right about it being no walk in the park but we can only take it day by day I will check back and provide any updates but now it's just delay after delay due to white blood cells and platelets being low but I'm so grateful my CA125 is way down so I'll take it 

Patsmom you are truly an inspiration because I had so many issues with my hysterectomy I could barely make it out of the house let alone go to disney so let the haters hate or stare but you made it through a memory making trip and that's the important thing


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## rewardsinlife

Wonderful idea! Love this thread!

I have a question..perhaps a little in advance but not too much. Had ultrasound and CT found cysts as well as 2 large masses in my pelvis area.already been told high likelihood of cancer with need for major surgery to remove it. Waiting on insurance to clear before surgery and still don't know stage and other treatment til, surgery and biopsy is done.  Anyway..I love DL and have a pass that ends in May. I was wondering what the recovery time would be like in waiting to go back after the surgery has taken place? Obviously...lap bars and seat belted rides are no doubt going to be painful as that is where the incension site is. Anyone have any ideas? ( I know some I will have to avoid for a while because of jerking like Indiana, space mountain, mattahorn, maters tow..). Any ideas welcome


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## Redwolf8812

Hey rewards!  I had both a hysterectomy and mastectomy at the same time back in January of 2011.  The recovery was about 6 weeks and wasn't too bad.  The most annoying thing were the "drains", these tubes that they leave inserted in the incision to drain the mucus/blood from the inside (I know, gross, right?). I'm not sure how my surgery compares to yours but maybe someone else will have more info for you.  Keep us posted!

- Penny


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## PatsMom

rewardsinlife said:


> Wonderful idea! Love this thread!
> 
> I have a question..perhaps a little in advance but not too much. Had ultrasound and CT found cysts as well as 2 large masses in my pelvis area.already been told high likelihood of cancer with need for major surgery to remove it. Waiting on insurance to clear before surgery and still don't know stage and other treatment til, surgery and biopsy is done.  Anyway..I love DL and have a pass that ends in May. I was wondering what the recovery time would be like in waiting to go back after the surgery has taken place? Obviously...lap bars and seat belted rides are no doubt going to be painful as that is where the incension site is. Anyone have any ideas? ( I know some I will have to avoid for a while because of jerking like Indiana, space mountain, mattahorn, maters tow..). Any ideas welcome



I went to WDW 10 days after a total abdominal hysterectomy. I took it easy and used a wheelchair off and on. I also did not do any of the rides that jerk you around or the coasters. Regular lap belts were no problem. You'll be wearing a seat belt when you are in a car so it isn't any different.

I am four weeks out and my incision is slowly healing. Most don't take nearly as long as mine. I am diabetic so the combination of diabetes and cancer combine to really slow healing for me. I am waiting to start chemo until my incision heals. 

Talk to the doctor who does your surgery. Mine was fine with me flying (short 3 hour flight) and doing Disney. But others might have other ideas. Good luck with your surgery. And then the waiting. Waiting for tests, for surgery, and for biopsy results - to me they are all more stressful than dealing with the results.


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## rewardsinlife

@Redwold8812 and @PatsMom thank you so much! I am getting referred right now to gynocologist after an MRI ...they want to see in even more detail I guess. I will keep you all updated..thanks again for the tips and support!


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## lmc318

Hi all!  Just wanted to pop in and say hi.    I'm in week 2 of treatment 2 of my last round of chemo before I get to take a break, assuming all is still at least the same when I'm done.  Right now I feel like crap.  The second week is always the worst, and the nausea and stomach upset has hit me extra hard this time.  Still not as bad as when I was on the cisplatin, but it's not fun either.  Feb 18 will be the last treatment and the CT will be March 8.  We're then headed to WDW on the 12th, so it had better be a good scan!!!  

My hair is falling out again.  I'm not sure why.  I had a little growth spurt in December and had almost an inch on top, but then all the dark hair started falling out again and I'm left with white hair that is sparse.  Still hoping for a Disney miracle, but I ordered a hat and have my wig just in case.  I really  hate wearing the wig and the thought of it all day in Florida is not appealing.  I know people say go with a scarf or a hat, but I'm just not comfortable with that.  I want to go to Disney and feel normal, not that people are staring at my head.  Well, we'll see what happens.  I'll keep everyone posted.

rewardsinlife - hope everything is going well with the new gyn.  Keep us posted.  

 to all.


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## Redwolf8812

Sorry you're not feeling so hot, Lisa.  At least you should be feeling much better for the trip.  I've done Disney with and w/o wigs.  My favorite was a scarf with a white, wide-brimmed hat on top of it.  The scarf hid my bald head and the hat kept the sun off my face.  The wig was too itchy and I just couldn't enjoy myself.  You mentioned you want to be "normal" in Disney.  You'd be surprised at how many people with disabilities go there.  No one even blinks an eye.  I say go for comfort.  

I get my first post-liver ablation scan tomorrow.  I've also been waiting @ 1 month for my oncologist to get my insurance company to approve my next round of chemo.  Very frustrating and a little scary being off treatment this long, although I'm enjoying how good I feel.

- Penny


----------



## Redwolf8812

Today's MRI showed that the big tumor in the liver looks all cooked up (from the ablation on 12/31/12). So ablation obviously works, thank The Lord. But there are two tiny new ones that weren't there 6 weeks ago so the radiologist will ablate them on the 28th. We got Godzilla. Now her babies are on our radar.

Meanwhile I'm still in limbo waiting for the insurance company to approve the oncologist's chemo plan for me. So frustrating but I'm glad the radiologist is willing to attack while we wait.

Praise The Lord for carrying me and my family through this, despite how angry I get. He must really love me if He puts up with all my rantings.

God Bless.

- Penny


----------



## PatsMom

Penny, I have to agree that dealing with the insurance companies can be incredibly frustrating. One doctor wanted to send my specimens to a special tumor board in Boston that specializes in cancer of unknown origin. But my insurance would not cover the very expensive consultation until the local resources had been exhausted. So my case has been reviewed by three tumor boards already and is only now going to the specialists.

Good luck with Godzilla's babies! Hope the ablation wipes them out too.

Linda


----------



## Redwolf8812

How is everyone?  Just thought I'd update - I was scheduled to have another liver ablation next Thursday but my oncologist and radiologist decided to cancel and give chemo another try.  I had chemo on Wednesday. On Thursday, I felt pretty tired. I had to go back to UPenn for a shot to boost my white blood cell county (neulasta). In the future, they'll just mail the neulasta to me so my husband or daughter can give me the shot. It has to be taken within 24-48 hours of chemo. And since white blood cells are manufactured in bone marrow, I started with some bone pain too. I should feel better within a week. This treatment is every 3 weeks.

The drug company that makes pertuzumab (the new drug that my oncologist wants to use with the chemo) got involved and the insurance company finally got around to rejecting it. So now the oncologist will either appeal the insurance company's decision or try to get it directly from the drug company (Genentech). However, getting it directly from Genentech will probably be a bust because we make just over the income limit. And who knows, it may not work anyway, or cause a bad reaction, which has happened to me in the past with other drugs.

Anyhow, side effects (physically and mentally) are taking their toll and I may have to go out on disability. I worked the numbers and our monthly income will go down quite a bit, but my husband says not to worry, we'll be fine, God will provide, as He always does. I used to enjoy being a mom, wife, and employee, and felt I gave my all but I can no longer give 100% to all 3 vocations. If something has to give, it'll have to be work.

We're looking forward to staying in a treehouse villas (handicap accessible) in May with friends, and my two elderly aunts that live down in Florida. Praying all goes well.

I still try to remember to thank God for the blessings in my life. He loves us.

God's Blessings to you all.

- Penny


----------



## lmc318

Redwolf8812 said:


> How is everyone?  Just thought I'd update - I was scheduled to have another liver ablation next Thursday but my oncologist and radiologist decided to cancel and give chemo another try.  I had chemo on Wednesday. On Thursday, I felt pretty tired. I had to go back to UPenn for a shot to boost my white blood cell county (neulasta). In the future, they'll just mail the neulasta to me so my husband or daughter can give me the shot. It has to be taken within 24-48 hours of chemo. And since white blood cells are manufactured in bone marrow, I started with some bone pain too. I should feel better within a week. This treatment is every 3 weeks.
> 
> The drug company that makes pertuzumab (the new drug that my oncologist wants to use with the chemo) got involved and the insurance company finally got around to rejecting it. So now the oncologist will either appeal the insurance company's decision or try to get it directly from the drug company (Genentech). However, getting it directly from Genentech will probably be a bust because we make just over the income limit. And who knows, it may not work anyway, or cause a bad reaction, which has happened to me in the past with other drugs.
> 
> Anyhow, side effects (physically and mentally) are taking their toll and I may have to go out on disability. I worked the numbers and our monthly income will go down quite a bit, but my husband says not to worry, we'll be fine, God will provide, as He always does. I used to enjoy being a mom, wife, and employee, and felt I gave my all but I can no longer give 100% to all 3 vocations. If something has to give, it'll have to be work.
> 
> We're looking forward to staying in a treehouse villas (handicap accessible) in May with friends, and my two elderly aunts that live down in Florida. Praying all goes well.
> 
> I still try to remember to thank God for the blessings in my life. He loves us.
> 
> God's Blessings to you all.
> 
> - Penny



Penny, I'm so sorry you have to go through this nonsense with the insurance company.  So far I've been lucky with mine, but I haven't had any new drugs yet.  I'm sure when that happens, I'll have to fight for them.  Hopefully this remission will last long enough that by then it won't be an issue.

I had to give up work early on (eta:  they have since let me go, even though I gave a return date for March.  Blessing in disguise.  It's a horrible company to work for).  Chemo has taken a big toll on me.  In the beginning, I was down for the count for a week and a half.  I'd go in on a Monday, get an infusion, be hooked up to 5FU, then go back in on Friday to be disconnected and for nausea meds and hydration.  Then I'd have to go back in on Saturday for my Neulasta shot.  It's still the same routine, but I don't get the nausea meds or hydration on Friday since the Carboplatin isn't as bad as the Cisplatin was.  But the effects of the Neulasta have gotten worse with each shot.  I tried once to have it the same day as my disconnect and my wbc dropped for the first time below normal levels.  So I'm back to the Saturday shot.  I used to get just back spasms and minor body aches a few days later, but this last time I had such horrible bone pain in every large bone in my body, mostly my legs. I look at it as my body churning out those wbc, keeping me healthy as least as much as it has control.  I go down today for my last shot of this round.  My CT is scheduled for 3/8 and, God willing, that will be the day they tell me everything is still in remission and I can take a BREAK!  Then on the 12th we go to the World.  Regardless of what that scan says, I need this vacation more than any other.  I'm exhausted and I need to just get away from it all, and we all know there is no where else that can take you away from reality better than Disney World.  

Keeping everyone in my thoughts.  Hopefully this miserable winter will be over soon and we can all at least get outside and get some fresh air and sunshine.  It always makes me feel better to feel the spring breeze in my face.



Take care,
Lisa


----------



## rewardsinlife

Hi all,
 Well I have some updates. Saw the gynocologist who sent me off immediately for a ca-125 blood test to check for ovarian cancer. Just found out that numbers were extremely elevated. She told me yesterday that my case is too complicated and she is sending me off to a teaching hospital for open abdominal surgery to get the ever growing masses out and biopsied. Suspected that I might have extreme endometriosis on top of everything else. So now I wait...for insurance to go through...and then a long recovery. But, I and everyone else here will prevail! We will make it...just might have to take a few trips to Disney before the big surgery day and other treatment 

Group hug!


----------



## lmc318

rewardsinlife said:
			
		

> Hi all,
> Well I have some updates. Saw the gynocologist who sent me off immediately for a ca-125 blood test to check for ovarian cancer. Just found out that numbers were extremely elevated. She told me yesterday that my case is too complicated and she is sending me off to a teaching hospital for open abdominal surgery to get the ever growing masses out and biopsied. Suspected that I might have extreme endometriosis on top of everything else. So now I wait...for insurance to go through...and then a long recovery. But, I and everyone else here will prevail! We will make it...just might have to take a few trips to Disney before the big surgery day and other treatment
> 
> Group hug!



Big hug going to you!!  You've got this. Definitely take the time to get yourself ready going into the fight. I think we all agree Disney is a perfect rev-up!  Sending good vibes your way. Keep us posted!


----------



## GoofyGraham

Since my last post here, a routine colonoscopy resulted in my having to have a general anaesthetic for the surgeon to have a good old poke around and take biopsy samples from the 'join'. Now waiting for the results to hear if anything is lurking.

 Just to cap that, yesterday I had to have a skin cancer removed from my face.

 They do say things come in threes.... hmmm what will be the third? Oh wait, that will be the herniated stoma wound!

 I so need my holiday!

 Don't get me wrong, I still know how lucky I am comparatively speaking.... I just feel entitled to join the 'cancer sucks' chorus. 

 Keep fighting folks.


----------



## PatsMom

Hello everyone, nice to get an update on how everyone is doing.

Cisplatin is an evil drug. I am having it every four weeks and it wipes me out every time. We haven't started neulasta yet because I will be on this for a while so they want to put it off as long as possible because of the side effects. I am going to China next week and will probably be on an antibiotic "just in case". Then Disney at the end of May. We work around chemo cycles but I have cisplatin/Gemzar on week 1, week 2 and 3 just Gemzar, then week four off so we cant' always do it. Especially since I never seem to get my week 2 Gemzar because my counts are so messed up from week 1 Cisplatin. Cisplatin doesn't make your hair fall out and Gemzar just thins it. I did get it cut real short this week. Easier to hide the bald spots!\

Fighting with insurance companies sucks. I keep battling with mine. And matching up bills with insurance statements and trying to make sure I only pay what I have to pay is almost a full time job! Hopefully it will settle down now that the surgeries are hopefully over and the rounds of the specialists to get a tumor type have ended. Not a fun process.


----------



## rewardsinlife

Well I don't know if I technically fit under this thread anymore...but I wanted to update you guys anyway. I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts. I had  had indeed ruptured which caused me a lot of pain. ( had to go to Er last week for nausea, loss of appetite, swollen abdomen, and extreme pain) The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have somthing similar?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. I still have a solid tumor that will  have to be biopsied and taken out..guess I will find out then if I have cancer in addition to endomitriosis. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense.  I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.


----------



## PatsMom

rewardsinlife said:


> Well I don't know if I technically fit under this thread anymore...but I wanted to update you guys anyway. I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts. I had  had indeed ruptured which caused me a lot of pain. ( had to go to Er last week for nausea, loss of appetite, swollen abdomen, and extreme pain) The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have somthing similar?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. I still have a solid tumor that will  have to be biopsied and taken out..guess I will find out then if I have cancer in addition to endomitriosis. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense.  I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.



I so hope this will turn out to be good news for you. Better menopause and medications than stage 4 cancer! Painful and emotionally tough but not terminal. HOpe that the solid tumor is just an anomaly. But as far as I am concerned, you still belong in the group. Stage 4 endo is stage 4 something! Much better to have no terminal diagnosis. But you are supportive and friendly and I think those are the only real criteria for a group like this. Rules can't be too strict!


----------



## rewardsinlife

Well I am glad I still fit in the group! I love this group! 

Tomorrow is surgery!  I am a bit nervous, but am more interested in what they find and how much they take out! Just keeping Disney in my mind for the long run so I can get back there soon! Love to you all! I will update once I am recovering.


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## Redwolf8812

Just got back from Treehouse Villas in Disney World.  Me, my husband, our 2 daughters, an aunt, my best friend and her mom.  The first night we were there two other close friends showed up as a surprise.  It was great.  My friends all took my girls around to the parks while my husband and I mostly relaxed and enjoyed being away.

Happy Mothers' Day!

- Penny


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## 3PrinceMom

Prayer's to all fighting Cancer....no matter what the stage. There is hope in faith and treatment. 

You can beat this!


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## PatsMom

Redwolf8812 said:


> Just got back from Treehouse Villas in Disney World.  Me, my husband, our 2 daughters, an aunt, my best friend and her mom.  The first night we were there two other close friends showed up as a surprise.  It was great.  My friends all took my girls around to the parks while my husband and I mostly relaxed and enjoyed being away.
> 
> Happy Mothers' Day!
> 
> - Penny



Sounds like a great trip. Hope you had a wonderful time. I am off in two weeks! Stamina is going to be huge this trip but my daughter and wheelchair pusher extraordinaire is going with me! Not sure what I will do in the fall when we go without her. I am hoping for remission and being able to walk. My husband can't push me and the problem with a scooter is that I am stuck with it. With the chair I can walk when I want to stretch and need some exercise. I can also leave it so I don't have to go through the alternate ride entrance at places like Spaceship Earth and Kilimanjaro Safari. I guess I can leave a scooter too I just think I am going to worry about something happening to expensive rented equipment! Especially since I will rent from an offsite company to save a few bucks.

Glad to see this thread back on the first page. Hello to all and I hope everyone is doing well right now. Read a great article today about biologic cancer drugs (like Avastin). Every new find gives me hope - I just have to stay alive long enough for them to find the next treatment for my type of cancer!


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## Mama Who

lmc318 said:


> Just wanted to share the great news!  I had my CT yesterday following my latest round of chemo and as of now, I am disease free!





YAY YOU!!!!!!


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## DisDee

I'm so glad I found this thread! I have recurrent, persistent and inoperable endometrial cancer but I'm not letting it stop me from doing the things I love, especially traveling. I'm currently on a monthly chemo treatment of Lipodox with scans after every third treatment. This is a treatment is maintenance for lack of a better term with hopes that the tumors remain stable and there is no additional growth. I started this journey in Dec. 2007 and my case has been the opposite of the norm since day 1.

With all that said, I recently returned from a cruise on Allure of the Seas and now I'm starting to actively plan our extended family trip to WDW in Oct. I experienced a problem on the cruise which I didn't quite know how to deal with so I tried to ignore it. I rented a wheelchair to be delivered to the ship because of the fatigue I sometimes experience and our stateroom attendant felt it was her obligation to make a comment as to whether I was walking or riding in the chair each time she saw me. She really got on my last nerve and I wonder if this is Royal Caribbean's way to test if someone really needs an accessible cabin. Maybe I'm just being paranoid but we all know about 'hidden disabilities" and the whispered comments that we sometimes hear. Well, enough of that because it was a really wonderful cruise.

I hope to be in good walking condition for the Oct. trip but I'm not sure as to whether I'll rent a scooter or bring a chair. I don't need assistance all the time but I'm grateful to have it when I need it.

I noticed a couple of you are from South Jersey/Phila. so I wanted to mention the upcoming Walk for Hope which is being held on Sept. 22. It starts at Campbell's field in Camden then over the Ben Franklin Bridge and ends at Head House Square in Old City. I wasn't able to walk last year but my team did and it was very uplifting!


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## Redwolf8812

DisDee, where are you in South Jersey?  I'm in Egg Harbor Twp.  I'll understand if you don't want to answer. We never know who we're dealing with here.


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## DisDee

Redwolf8812 said:


> DisDee, where are you in South Jersey?  I'm in Egg Harbor Twp.  I'll understand if you don't want to answer. We never know who we're dealing with here.



I live in the Cherry Hill area.


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## Redwolf8812

DisDee said:


> I live in the Cherry Hill area.



Home of the Cheesecake Factory!  I got to UPenn for treatment and sometimes we stop there on the way home. 

- Penny


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## PatsMom

I'm offf tomorrow and so looking forward to it. DisDee - I am learning to ignore the comments and "looks". Let those people walk a mile in my shoes is the thought I try to stick with. the chair does not shorten my waits, it makes them longer usually - that's why I like to leave it at some attractions. There is still a perception that a wheelchair means "front of the line". It really means "get pulled out of line and wait". 

The chair is a lifesaver while doing chemo. The exhaustion is just so overwhelming sometimes. Today I am nauseous. Not supposed to be based on how many days it has been since treatment but I am. So I am taking medications and they make me even more tired. I believe that as long as I am doing chemo I will need help at Disney. That will be either a chair or scooter depending on whether my daughter is going with me or not. She likes to push me - makes her feel in control. And she demands a bribe since she is saving me a ton of money! We own our own wheel chair but would have to rent a scooter. So she is a tremendous savings, until it is souvenir time. Then she reminds me that she just spent a week wheeling my butt around Disney!


----------



## Piper

PatsMom said:


> Sounds like a great trip. Hope you had a wonderful time. I am off in two weeks! Stamina is going to be huge this trip but my daughter and wheelchair pusher extraordinaire is going with me! Not sure what I will do in the fall when we go without her. I am hoping for remission and being able to walk. My husband can't push me and the problem with a scooter is that I am stuck with it. With the chair I can walk when I want to stretch and need some exercise. I can also leave it so I don't have to go through the alternate ride entrance at places like Spaceship Earth and Kilimanjaro Safari. I guess I can leave a scooter too I just think I am going to worry about something happening to expensive rented equipment! Especially since I will rent from an offsite company to save a few bucks.
> 
> Glad to see this thread back on the first page. Hello to all and I hope everyone is doing well right now. Read a great article today about biologic cancer drugs (like Avastin). Every new find gives me hope - I just have to stay alive long enough for them to find the next treatment for my type of cancer!



Pat's Mom--you can park the ECV in the stroller parking area when you feel the need to walk!  Just be sure to take the key with you!


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## theebeemommy

Hey guys newer to disboards. Husband was diagnosed with stage 2-early three rectal cancer. We pushed back trip after diagnosis to start and finish  course of radiation and chemo (NFu pump). He will be one week post 5 week treatment when we go ( when we get back he has 3-4 more weeks to heal aka recover from treatment before they do surgery ). He really wants to go to Disney prior to surgery instead of pushing trip to next year. He's relatively young 38 and we have three kids. He'll be going back to nap with our two year old. Do you guys think we should get a wheelchair just in case?? As of now he feels great after a day unplugged from chemo pump on weekends. He doesn't want wheelchair but I think it's not a bad idea . Looking for any guidance! Prayers to you all! Lost my dad to prostate cancer and my mom is in remission from beast cancer! Cancer stinks but cancer can never take ones faith and love!!!!


----------



## rewardsinlife

theebeemommy said:


> Hey guys newer to disboards. Husband was diagnosed with stage 2-early three rectal cancer. We pushed back trip after diagnosis to start and finish  course of radiation and chemo (NFu pump). He will be one week post 5 week treatment when we go ( when we get back he has 3-4 more weeks to heal aka recover from treatment before they do surgery ). He really wants to go to Disney prior to surgery instead of pushing trip to next year. He's relatively young 38 and we have three kids. He'll be going back to nap with our two year old. Do you guys think we should get a wheelchair just in case?? As of now he feels great after a day unplugged from chemo pump on weekends. He doesn't want wheelchair but I think it's not a bad idea . Looking for any guidance! Prayers to you all! Lost my dad to prostate cancer and my mom is in remission from beast cancer! Cancer stinks but cancer can never take ones faith and love!!!!



Sorry to hear about your husband. You do seem to have the right outlook though to not let it get you all down!

This is what I have done in the past with the wheelchair. At first, I would just go and walk as far as I could. Then if it was still relatively early in the day, one of my family members would go back to the entrance and rent a WC for the rest of the day from the park. This worked a couple times till we got Annual passes and knew it would get quite expensive doing this.

So..I bought a wheelchair ( cheap..and somewhat light one that I could propel myself in when family got tired). Days I am exhausted I ride in it from the very beginning of the day. Other days I feel ok to walk, we leave itin the car in the parking lot and then someone goes back to get it when needed.( usually one of the members of my family needs a break from the crowds at this point anyway so it works  out pretty well.) 

If you don't want to buy one..many places you can rent and do the same type if thing with using it half day...or when tired. Find the sticky at the top of the disability thread to find all the places thatmwill rent ecv or WC for cheap and of course are reliable as well. Might even work well for him to go back to room and take a nap with the two year old and then bring backin the WC then when returning to the park..since as the day wears on fatigue will set in!

Hope this helps


----------



## Disney_Fanatic25

Hi everyone! My name is Christina and I have been battling CML which is a chronic form of leukemia for about a year. I'm just starting yet another round of chemo in hopes I can go into remission. I want to go to Disney next week with my kids before they go to their dads for the summer but haven't been since I have been diagnosed so I don't know what to expect. I also have a son who is autistic and an adhd daughter so this should be interesting Lol I just hope I survive the trip. Well I just wanted to introduce myself and prayers for those going through treatment right now. I'm glad there is a place on the boards for those of us going through this.


----------



## theebeemommy

Disney_Fanatic25 said:


> Hi everyone! My name is Christina and I have been battling CML which is a chronic form of leukemia for about a year. I'm just starting yet another round of chemo in hopes I can go into remission. I want to go to Disney next week with my kids before they go to their dads for the summer but haven't been since I have been diagnosed so I don't know what to expect. I also have a son who is autistic and an adhd daughter so this should be interesting Lol I just hope I survive the trip. Well I just wanted to introduce myself and prayers for those going through treatment right now. I'm glad there is a place on the boards for those of us going through this.



Prayers to you! I work exclusively with kids with autism as a speech therapist in the schools and I hope and pray for your recovery and for a wonderful trip for your Family! You deserve it!


----------



## DisDee

Redwolf8812 said:


> Home of the Cheesecake Factory!  I got to UPenn for treatment and sometimes we stop there on the way home.
> 
> - Penny



Yes, we are fairly close to the CCF!

 My BIL is also is undergoing treatment at Penn for Leukemia. In fact he recently received word that a match has been found so he will be admitted next week to start the process. Many prayers have been answered!!!!! 

I am currently a patient at Cooper and so far so good!


----------



## dizprincess27

I live in Mt. Laurel NJ and am a patient of Cooper Cancer Center in Voorhees!  Small world pun intended lol


----------



## Disney_Fanatic25

I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?


----------



## amykathleen2005

Disney_Fanatic25 said:


> I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?




Try domperadone. You'll have to get it from a compounding pharmacy. You will need a prescription, but it works well.

Or pregnancy pops.


----------



## Disney_Fanatic25

amykathleen2005 said:
			
		

> Try domperadone. You'll have to get it from a compounding pharmacy. You will need a prescription, but it works well.
> 
> Or pregnancy pops.



Thanks! I'll talk to my doctor about it.


----------



## PatsMom

Disney_Fanatic25 said:


> I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?



Depending on what state you live in, you could check on marijuana. It has helped some find relief from the nausea.


----------



## Redwolf8812

Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working. 

When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away. 

Not the kind of answers I wanted, but it is what it is.

"Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin


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## Redwolf8812

Disney_Fanatic25 said:


> I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?



What state do you live in?  Here in NJ, marijuana has been approved for terminally ill patients, but there are a lot of hoops to jump through.  There's a state-monitored website that you have to register on, as does you doctor, and it costs each $200.  Then it's $600 for a month supply.  My problem is that I live in NJ but am treated in PA, so it's a moot point for us, and anyhow, I really don't want a government agency having access to that kind of information about me.


----------



## PatsMom

Redwolf8812 said:


> Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working.
> 
> When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away.
> 
> Not the kind of answers I wanted, but it is what it is.
> 
> "Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin



I will be praying for good scan results for you. If you are not blessed with them, then I hope that you have lots of loving family to support you through the difficult times. Hopefully there is a treatment that will work for you! I assume that all the experimental drugs have been looked at too?


----------



## stargazertechie

PatsMom said:


> Depending on what state you live in, you could check on marijuana. It has helped some find relief from the nausea.



This was going to be my recommendation as well if you live in a state with MMJ


----------



## Redwolf8812

So I've made a decision to stop feeling anxious and put it in God's Hands.

My recent bloodwork shows liver still functioning as it should. Thank You, Lord! I've made a decision that I can only have positive attitudes. Fear is of the devil. So, as far as the scan I have coming up on the 25th, I am looking forward to hearing great news on the results! Praise God!

As my friend said, I've got the "little liver that could".  LOL.

- Penny


----------



## bdink921

Disney_Fanatic25 said:


> I'm hoping someone can help I am having a lot of nausea and vomiting. I'm allergic to all of the typical anti nausea meds like zofran compazine reglan. The only one I can take is phenegran but it isn't working. I've tried sucking on pepermints and drinking flat soda but nothing is helping. I'm trying to not have to go in to the hospital. Any tips on getting this under control?



That's a tough one.  Does kytril fall into your list of allergies?  If not, it comes in tablet form but also as a 7 day patch.  Scopolamine patches also are sometimes good too but have some side effects.  Have you tried ginger?  There are candies and teas with ginger.


----------



## DisDee

Redwolf8812 said:


> So I've made a decision to stop feeling anxious and put it in God's Hands.
> 
> My recent bloodwork shows liver still functioning as it should. Thank You, Lord! I've made a decision that I can only have positive attitudes. Fear is of the devil. So, as far as the scan I have coming up on the 25th, I am looking forward to hearing great news on the results! Praise God!
> 
> As my friend said, I've got the "little liver that could".  LOL.
> 
> - Penny



My thoughts and prayers are with you Penny. I understand what you are going through as I have 2 different tests on the 27th. If the tumors have not grown I should be able to continue treatment as long as my cardiac test is good. If not, we'll have to come up with another course of treatment. As you said anxiety can get the best of us and I'm fighting with those feelings too. I know that worrying won't change the outcome but sometimes its hard not to.

It sounds like you have a strong faith and that is so important at a time like this. Fight like a girl!


----------



## kimatiu

Hi everyone. My name is Kim and I have stage 4 pancreatic cancer. I'm on a stiff multi drug chemo regimen that so far seems to be working. Still term I also but maybe will get more than a year to hang around the family is my hope. 

 We decided to plan some Disney trips to keep our spirits up. So far a family cruise on the Fantasy and last night booked a week long trip for husband and me to Disney world. The planning is a great distraction from all the chemo stuff. And looking at trip reports and pics of Disney food is a great wayti be entertained when I am too tired to get out of bed. 

More later


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## PatsMom

kimatiu said:


> Hi everyone. My name is Kim and I have stage 4 pancreatic cancer. I'm on a stiff multi drug chemo regimen that so far seems to be working. Still term I also but maybe will get more than a year to hang around the family is my hope.
> 
> We decided to plan some Disney trips to keep our spirits up. So far a family cruise on the Fantasy and last night booked a week long trip for husband and me to Disney world. The planning is a great distraction from all the chemo stuff. And looking at trip reports and pics of Disney food is a great wayti be entertained when I am too tired to get out of bed.
> 
> More later



Welcome, but sorry you are joining us. Glad your current chemo regimen seems to be working and I hope it buys you enough qualify time to get in a few Disney trips with the family. They are great memories to leave behind! And as you mentioned, planning the trips is a distraction for you. The only thing I didn't like about our last trip was that I was not hungry. Had to force myself to eat. Eating was always the best part of vacation for me so it is very sad for me to not want to eat!


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## kimatiu

Decided to book a trip to Disney for my husband and myself for early December. That's still within the year the oncologist gave me before I started chemo. Staying at the Wilderness Lodge. Got a pin for a free dining plan, only cost me 300 bucks to upgrade the room (ha ha). We had to move from a woods view to a courtyard view...and the reservation rep put us in a bunk bed room...grrr. Fortunately it still has a queen bed. But then the rep put in for one adult and one child dining plan. Sheesh. I know I'm not eating much now but I sure don't want to order off the kids' menu - only so many chicken fingers a girl can stand,  right?! Supposedly another rep got that fixed - we'll see when we get there.

I had a lot of fun booking meals tho. Funny how I"m not hungry in RL but all the menus at Disney had me drooling. And all the pics of food - oh man do they look delicious. Wish sweets looked as good here. Maybe I just need a Mickey ice cream bar. That has got to be the cure all for chemo nausea don't ya think?

And I booked a cruise for the end of October with the rest of my family - on DCL. It will be our first time on DCL - we've done Dolphin (an old line that is long out of business), Carnival, and Princess. We're doing the Western Caribbean route. I hope to have enough energy to get off the boat and go to at least one beach. If not, there seems to be stuff to do on board.

So I'm getting in my Disney fix. If I get a few extra months, who knows...an Alaska cruise maybe or the Adult Disneyland (Las Vegas)

Trying to stay positive and love having Disney fun to plan and look forward to.

Hope everyone else is hanging in there.


----------



## Redwolf8812

My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!


----------



## PatsMom

Redwolf8812 said:


> My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!



Wonderful news. Hope that the good results just keep on coming! I am so hoping that the taxotere I am starting on will shrink the tumors. I think I will be much more comfortable then. Sick of taking higher and higher doses of pain meds. The palliative care people are doing a great job and will keep working with me. 

I have another Disney trip scheduled for this fall and I am not cancelling. My daughter will not be able to go because of her school schedule and my husband can't push a wheelchair. So I think it will be a scooter trip. Not really looking forward to that since I am afraid that I am going to run someone over! Not only that but if I want it at the resort I will have to deal with loading and unloading it on the bus. I can see the lovely looks I am going to get now - I will get off the scooter, my husband will drive it on the bus and park it, then the two of us will board. That is how it is supposed to work but people think you are getting some huge benefit boarding first and "cheating" the system because of the driver switch. 

Hope everyone has a wonderful Fourth of July holiday.


----------



## kimatiu

Redwolf8812 said:


> My most recent scan looks good. Only 1 remaining tumor and it's smaller than before. Doctor is thrilled and says to keep "storming the gates of Heaven" with our prayers. Thank You, Lord! Thank you Mother Mary and Blessed Zelie Martin and all the angels and saints! Love you all!





That is awesome news. I love it when results seem to surprise the docs! Keep up the positive thoughts and prayers.


----------



## kimatiu

I tried a scooter at Walmart the other day for the first time - was just too tired to walk anymore. And I had the same reaction - was terrified I'd run into someone. People kept popping out of aisles without looking down. I know I do the same thing.


----------



## Piper

kimatiu said:


> I tried a scooter at Walmart the other day for the first time - was just too tired to walk anymore. And I had the same reaction - was terrified I'd run into someone. People kept popping out of aisles without looking down. I know I do the same thing.



After you have used a scooter for a while (or a power wheel chair) you get used to really watching the people around you.  I always check carefully before I cross an aisle.  I have gotten much better at anticipating what others will do.  One of my biggest pet peeves at a store is people who block the aisle with their carts and won't move them!


----------



## kimatiu

PatsMom said:


> Welcome, but sorry you are joining us. Glad your current chemo regimen seems to be working and I hope it buys you enough qualify time to get in a few Disney trips with the family. They are great memories to leave behind! And as you mentioned, planning the trips is a distraction for you. The only thing I didn't like about our last trip was that I was not hungry. Had to force myself to eat. Eating was always the best part of vacation for me so it is very sad for me to not want to eat!



That is my biggest worry too - that I won't be hungry enough to really enjoy all the good Disney food. I plan to have 3 weeks off chemo before the cruise and hopefully be done with chemo be for the WDW trip in December. Hopefully 3 weeks will be enough time to get a little appetite back. 

I am also really worried about being so tired I can't enjoy stuff or walk around the ship. In WDW we are already thinking about a wheelchair. But that seems awkward on the boat with narrow halls and doors. Will play it by ear. The local hospital here has started a program of physical therapy for cancer patients. I go tomorrow to be evaluated. The therapy is supposed to help build up stamina. That would be a good thing.


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## ross0354

Hello everyone! This thread is exactly what I've been looking for! My husband (29yrs old) was diagnosed with stage 4 cholangiocarcinoma (bile duct cancer) in March 2013. It was always our dream to bring our son, 2yrs old, to Disney someday. With so much uncertainty in the future, we decided to go September 2013. 
My husband has been getting chemo every other week since he was diagnosed in March. The chemo and the cancer itself leave him feeling pretty run down most of the time. He has significant pain, fatigue, and nausea. We are planning on going for 1 week, doing 1 park/day for 4 days and taking the other days off. We're also renting a scooter and planning to return to the resort in the afternoon for rest/nap time. Does anyone have any other tips to make things go smoothly?
We are planning on staying at Old Key West and using the busses to get to the parks. Any tips for transportation? 
Do you think he could benefit from using a GAC?
Also, has anyone had to obtain medical care while at Disney? My biggest concern is my husband sometimes develops ascites and needs to have paracentisis to have the fluid drained. At home, he can just go outpatient to the hospital and have it done in about 30minutes. Any tips on how such a procedure could be coordinated while at Disney? Especially if we won't have a car. 

Thank you!


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## ttintagel

ross0354 said:


> Do you think he could benefit from using a GAC?



It's hard to say. What do you think his needs may be, beyond what the scooter will take care of? He may be a bit slow getting in and out of ride vehicles, but you don't need a GAC for that - just tell the CM at the load/unload area. (The Peoplemover and Peter Pan are the only moving walkways that can't be slowed.) Can he walk up or down a few steps if he needs to?

The scooter can go in most lines, but there are some, like Pirates of the Caribbean, where he'll have to transfer into a manual wheelchair. 

My advice is to read up on the attractions as much as you've got time for, make note of anything he might need help with, then go ti City Hall when you're there and explain it to them and see what they recommend. The DisAbilities FAQ will also have lots of info on different rides.



ross0354 said:


> He has significant pain, fatigue, and nausea.



I've read that Star Tours, Dinosaur, Mad Tea Party, and Soarin' have been known to give nausea-prone folks motion sickness, FWIW. When I was going through chemo, certain smells triggered nausea, but I'm not sure if there's much you can do about that. I've heard you can request special allergy cleanings for hotel rooms, but I'm not sure who to call about it. I've asked for unscented soaps and shampoos, but have been told no and always end up bringing my own.



ross0354 said:


> Also, has anyone had to obtain medical care while at Disney? My biggest concern is my husband sometimes develops ascites and needs to have paracentisis to have the fluid drained. At home, he can just go outpatient to the hospital and have it done in about 30minutes. Any tips on how such a procedure could be coordinated while at Disney? Especially if we won't have a car.



I've never needed anything that specialized, so take this with a giant grain of salt, but I was happy with the general ER care I got at Florida Celebrations Hospital for a broken bone. Your husband's oncologist may be able to recommend someplace better suited. I went in an ambulance, but I'm sure OKW would arrange a taxi for you.


----------



## ArwenMarie

I hope you all have a wonderful trip together.


----------



## DCDisney

Personally I would rent a car and get a handicapped hang tag.  My brother had a similar cancer and resisted the handicapped tag but it helps so much to conserve energy for more important stuff.  Being able to drive and get supplies, food, pharmacy, , hospital, etc without it having to be a big deal can be really helpful.  Waiting for buses in the heat can be tiring so if you've rented an ecv that can go in the car you might find that preferable.


----------



## Redwolf8812

Hi Ross0354.  It looks like you've been given some good advice so I'm just posting to welcome you.  It sounds like your husband and your small child will sort of be on the same schedule (needing naps) so that's good.  Are you bringing a friend or another family member?  That would be a great help if you could do that.  I think you'll be exhausted right along with your husband and child but if you have help, you'll be able to keep your energy up a little better.  (Here I go giving advice when I said I wouldn't).  LOL.

God Bless all of you.

Penny


----------



## GadgetTheInventor

The boards here have been a great distraction from cancer for me recently. It's been a week now that my fiancee hasn't woken up yet from surgery.  When she had the brain tumor out during the first surgery, she was in a coma for a month and the doctor kept wanting to pull the plug near the end.  Distractions make the time pass more quickly and help keep my mind off the worst.

We've been battling cancer for four years now.  The doctor gave a pretty grim prognosis recently but she's outlived their estimates before and aren't adults in their 20's supposed to ignore what their elders say?  The irony is that she finished up her latest round of chemo this past Dec. and was diagnosed with a non-cancerous brain tumor during a routine check-up in Feb.  

The cancer has been quite tough at times...she has lost a kidney, part of her intestine and stomach, and a rib.  Her liver and remaining kidney aren't doing well at all right now.  The brain surgery has added a whole new set of challenges though since she lost certain parts of her memory and has had to learn to walk, talk, eat, etc. again.  The good part is that she has forgotten how rough the past four years have been!

So, I just wanted to introduce myself.  I don't know how frequently I will be back to this thread.  We are supposed to be moving in a week.  I don't know if that will be happening or not because our move has already been postponed from last month to this month.  I do agree with some of the PPs in that it is nice to have a separate thread for our topic.  I've actually never gotten involved with other groups during the past few years, but this thread just felt right.


----------



## TRICKY_TINK

Glad I found this thread. I have a question about touring abilities with stage 3 breast and stage 4 bone cancer. My Girlfriend whom I've known since childhood and was in my wedding party has been fighting cancer for 3 years now. She has had lots of ups and downs in that time. Well its back again. I know she is in a lot of pain. She just started hospice and they have not found a good mix for her pain management. They are no longer doing cancer treatment they have told her to enjoy life. What does that mean really? She refused to be given a time table so we don't know. I want to take her to Disney. She has never been financially able to bring her son and I'm starting to get the feeling she may not come out of this. I should have done this sooner but she's young and I really didn't think it was going to come to this. Can anyone tell me what sort of things she can do. She is in a wheelchair but can briefly be up and walking around. I know thrill rides are out. But Pirates, small world, pooh, people mover, buzz and such should be ok right? I have not said anything to her, yet. Do you think she would be cleared to go? Does the starting of hospice mean they feel the end is vary near? I'm so confused and feel awkward inviting her on a trip if she physically cannot go esp. if she really would want to. Any guidance here would be appreciated.


----------



## rewardsinlife

TRICKY_TINK said:


> Glad I found this thread. I have a question about touring abilities with stage 3 breast and stage 4 bone cancer. My Girlfriend whom I've known since childhood and was in my wedding party has been fighting cancer for 3 years now. She has had lots of ups and downs in that time. Well its back again. I know she is in a lot of pain. She just started hospice and they have not found a good mix for her pain management. They are no longer doing cancer treatment they have told her to enjoy life. What does that mean really? She refused to be given a time table so we don't know. I want to take her to Disney. She has never been financially able to bring her son and I'm starting to get the feeling she may not come out of this. I should have done this sooner but she's young and I really didn't think it was going to come to this. Can anyone tell me what sort of things she can do. She is in a wheelchair but can briefly be up and walking around. I know thrill rides are out. But Pirates, small world, pooh, people mover, buzz and such should be ok right? I have not said anything to her, yet. Do you think she would be cleared to go? Does the starting of hospice mean they feel the end is vary near? I'm so confused and feel awkward inviting her on a trip if she physically cannot go esp. if she really would want to. Any guidance here would be appreciated.



First, I am so sorry for your friend's diagnosis. ..and that you are such a great friend to set this up for her.

Now, there are a couple of confusing statements in your message. If she is stage 3 boarding 4 it is quite strange that dr.s would stop treatment and tell her to enjoy life. That is usually the patient's decision. For instance, my grandmother has had stage 4 breast cancer for over ten years now and she jut keeps going with the treatments when she is strong enough. ( if her anemia isn't too bad, she gets chemo) Are you sure that your friend hasn't said enough is enough and wants to live out the rest of her life without all the medications and appointments? I think this is very important to determine first if going on a trip. 

Hospice is not a death sentence as it has become to be termed by society. There are of course many levels of hospice available. I knew someone who was on hospice care for 5 years before she passed away...she was very independent and even went to her son's soccer game one month before she passed away. ( she had breast travel to brain cancer). 

Personally I would say go for it if your friend is up to it. If you can even manage to stay a couple days just to do the park it might be worth it so you all don't feel rushed and she won't get too exhausted. If the dr.s told her to enjoy life..then there should be no problem having her be able to go.  Just know that a trip will move slower and take more time than if you were traveling with all healthy members. 

P.s. If you end up going renting a wheelchair..if she doesn't already have one... is a must for endurance through the parks.  hope this helps!


----------



## bopper

How far away from Disney do you live?
Your sig says South Florida....you could drive and stay at a value hotel and it would not cost tons and tons of money.
You could maybe approach her and say that you want to help her live the most she can and you wonder if she would be up for Disney?  Let's say she says yes.  Even if she can't do all day she might be able to see some of the shows and mild rides.  She could go back and rest in the afternoon and you could take her son to the pool (or whatever).
But if she says no, then you could watch videos with her and help out with her son. Tell her you are happy to help her in whichever way she gets the most value out of.


----------



## DCDisney

I'm so sorry your friend is having such a rough time.  Hospice programs are all different but the most typical length of traditional hospice coverage is 6 months.  For younger people they seem to not usually want to stop treatment until things are very advanced so I would think doing the trip very soon would be best.  She may or may not want to do rides getting bumped around may be pretty uncomfortable.  She may be on blood thinners which you can't do any rides that are rough at all.  Nausea may also be a concern.  But even just doing a few things and getting to enjoy a magical moment with her child may be wonderful.   I'd mention it very briefly and let her direct the conversation.  Once my brother realized he wasn't going to get better he avoided talking about things that were just too much for him.  He only lived 2 weeks once they stopped treatments and the Drs had all said 2-3 months.  I'm sad he missed taking his kids, 3 and 5, to WDW but we will take them soon.  You are a great friend!


----------



## TRICKY_TINK

To be honest I don't know what questions to ask her to get clear answers. I feel uncomfortable asking tough questions. I know she has had tons of surgeries and gone through many rounds of chemo and radiation. I think she hasn't responded to any of it and the treatment itself was killing her, so that is likely why they pulled it. I'm sure it was her choice, which must have been tough considering she has a young child. She has not been talking regularly like she used to since Hospice kicked in. I don't know what facility she went to and she isn't answering my calls or Facebook messages. I'm worried to say the least. Last I heard she would be there around two weeks to find the right mix for pain management. I took that as meaning she would go back home after that and have home care as needed. She choose not to have the doctor tell her a time frame which is fine I don't think I would like knowing that opinion myself. I'm really kicking myself for not doing this sooner when she was feeling good. We did however get to go skydiving as it was on her bucket list and who says no to a friend in her position. If anyone would like she has a Facebook page created by another friend its called Crystal Dawns Fight Againt Breast & Bone Cancer. Lets spread the love!


----------



## SallyfromDE

Would you be able to speak to any of her hospice nurses? They would have more intimate knowledge of your friends diagnosis. I don't think anyone wouldn't want to say anything out of place.


----------



## TRICKY_TINK

Went into Hospice to see her. Talked with her Nurse and got her discharged for a Disney Trip over the weekend. Her ex boyfriend had set up a hotel and tickets threw a friend of a friend type thing. She had a great time. Didn't do to many attractions. But she got her 1st visit in and that's what counts. She did get on Haunted Mansion, got to ride the Monorail watched a parade and Wishes. She did some of the kiddy stuff and Pirates too. They stayed an extra day today and I'm back home. Thanks everybody! She will return to hospice when she gets back. The ex is going to take her home with him and have them do home hospice for the remainder of the time.


----------



## ttintagel

Thanks for the update; sounds like she had a great time!


----------



## DCDisney

I'm so happy you guys were able to make this special wish come true!


----------



## Redwolf8812

GadgetTheInventor said:


> The boards here have been a great distraction from cancer for me recently. It's been a week now that my fiancee hasn't woken up yet from surgery.  When she had the brain tumor out during the first surgery, she was in a coma for a month and the doctor kept wanting to pull the plug near the end.  Distractions make the time pass more quickly and help keep my mind off the worst.
> 
> We've been battling cancer for four years now.  The doctor gave a pretty grim prognosis recently but she's outlived their estimates before and aren't adults in their 20's supposed to ignore what their elders say?  The irony is that she finished up her latest round of chemo this past Dec. and was diagnosed with a non-cancerous brain tumor during a routine check-up in Feb.
> 
> The cancer has been quite tough at times...she has lost a kidney, part of her intestine and stomach, and a rib.  Her liver and remaining kidney aren't doing well at all right now.  The brain surgery has added a whole new set of challenges though since she lost certain parts of her memory and has had to learn to walk, talk, eat, etc. again.  The good part is that she has forgotten how rough the past four years have been!
> 
> So, I just wanted to introduce myself.  I don't know how frequently I will be back to this thread.  We are supposed to be moving in a week.  I don't know if that will be happening or not because our move has already been postponed from last month to this month.  I do agree with some of the PPs in that it is nice to have a separate thread for our topic.  I've actually never gotten involved with other groups during the past few years, but this thread just felt right.



Welcome.  Hope things are a bit better.  Praying for you...

- Penny


----------



## slcmom

Hi everyone
Thanks for this thread. I'm truly sorry there's a need for it....I'm currently in remission from stage 4 cervical cancer. They did chemo and radiation at the same time, and lots of little surgeries and procedures, then did a huge operation - an complete anterior  exenteration and radical hysterectomy. I was in the hospital and rehab center for 4 months after that. I'm grateful to be in remission. It's been a year so far. I haven't regained any stamina, but am in no pain.

I haven't been to Disney since this all started 2 years ago, but have filled many hours planning fantasy trips! Hopefully I'll actually be able to take one on of these days.

All of you are in my prayers,
Ann


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## Redwolf8812

slcmom said:


> Hi everyone
> Thanks for this thread. I'm truly sorry there's a need for it....I'm currently in remission from stage 4 cervical cancer. They did chemo and radiation at the same time, and lots of little surgeries and procedures, then did a huge operation - an complete anterior  exenteration and radical hysterectomy. I was in the hospital and rehab center for 4 months after that. I'm grateful to be in remission. It's been a year so far. I haven't regained any stamina, but am in no pain.
> 
> I haven't been to Disney since this all started 2 years ago, but have filled many hours planning fantasy trips! Hopefully I'll actually be able to take one on of these days.
> 
> All of you are in my prayers,
> Ann



Welcome!  Thank the Lord for your remission!  I hope you get back to Disney soon!

- Penny


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## Redwolf8812

Checking in.  How is everyone?  I have a scan on the 8th - please pray, pray, pray!

I now have a wheelchair that's mine for as long as the insurance company pays the rental company.  The last time we went to Disney we flew down and rented a wheelchair there.  Does anyone have any experience with flying with your own wheelchair?  Do most airlines allow it?  Is there a fee?  Etc, etc.

Thanks.

- Penny


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## Talking Hands

I am just starting on the journey of this monster called breast cancer.  Diagnosed earlier this month.  I certainly plan to visit WDW while I am going through treatment.  Disney is my happy place.


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## TreeSapp

lmc318 said:


> I have a feeling I'll need to rent a wheelchair or ECV while I'm there, but I'm hoping not.  During my cycle good weeks, I feel pretty good, but the more treatment I have, the more exhausted I get, so we'll see.
> Lisa



There's a really nice thread going about "what having a wheelchair means" right now. It's ok to have one & it's ok not to use it when you don't want!


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## DisDee

Redwolf8812 said:


> Checking in.  How is everyone?  I have a scan on the 8th - please pray, pray, pray!
> 
> I now have a wheelchair that's mine for as long as the insurance company pays the rental company.  The last time we went to Disney we flew down and rented a wheelchair there.  Does anyone have any experience with flying with your own wheelchair?  Do most airlines allow it?  Is there a fee?  Etc, etc.
> 
> Thanks.
> 
> - Penny



Penny, I've flown with my own wheelchair and there's no charge. The airline actually gate checks it. You should be among the first to board but last off. Any chance you are flying Spirit out of Atlantic City?

Prayers to you for your scan. I'll probably have mine on the 14th then fly away to WDW on the 15th. I'll wait for the results until I get back but sometimes I just prefer to know and be done with the anxiety. 

I'm still debating about the chair this time. We took it on our 4-night cruise over Labor Day weekend and used it on the ship occasionally. Mostly in the evening when I was fatigued. I was able to get around the port as long as I relaxed on a bench every now and then.


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## limabeanmom2003

Talking Hands said:


> I am just starting on the journey of this monster called breast cancer.  Diagnosed earlier this month.  I certainly plan to visit WDW while I am going through treatment.  Disney is my happy place.



You deserve your "happy place"!  You are in my prayers!


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## DebbieB

My mom was first diagnosed with breast cancer in March 1996.   We had to cancel a Disney trip planned that month.  It didn't look good, it had spread into her lymph nodes.  She had surgery, radiation & chemo and I rescheduled the trip for November.  Her hair was just coming in, it was very short. She did not want to go, she was very depressed.   I pushed her and she went and it totally changed her outlook.  She realized she still had a life.   Unfortunately, it came back at the end of 1999.  She started on Herceptin and when that stopped working she went on various types of chemo.  We still managed our twice a year trips to WDW.  There were times when she needed to rest, we always took an afternoon break.   It eventually took over her liver and she passed away in 2005, almost 10 years after her diagnosis.   She told me before she died that she never regretted going on all our vacations even though sometimes it was hard.    It reminded me of the Leeann Womack song "if you have a choice to sit it out or dance, I hope you dance".


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## Redwolf8812

I just had an MRI of my liver this past Tuesday.  2 little tumors and 1 bigger one. Not as good as June but still better than back in March and about the same as this time last year. Looks like I'll be having another RFA (Radiofrequency Ablation) on those tumors then continue on with more chemo.  I'm trying to absorb all this so I can "pull my boot straps back up and get back in the saddle".  Thanks for all the prayers. I don't think remission or a cure is His Will for me right now. I still thank Him for all my Blessings.  I pray He allows us to have this upcoming vacation in Disney in December as planned, especially to spend the time with family and friends and see the Christmas lights.

God Bless.

- Penny


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## peainapod

I have no advice just and prayers for recovery and a great Disney trip!


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## Redwolf8812

A radiofrequency ablation of the three tumors in my liver will be done tomorrow @12:30. It'll probably take about an hour and then I stay in recovery for @ 6 hours before they send me home. I will keep you posted thereafter. Again I ask for prayers. I place my health, my family, my medical team, the procedure and its results in God's Hands. I consecrate them to Him and ask Him to bless them, for the praise and Glory of the Lord, in Jesus' name, I pray. Amen.
To learn more about RFA, click here: http://www.uphs.upenn.edu/radiology/patient/services/ir/info/radio.html


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## dreamn_Disney

Redwolf8812 said:


> A radiofrequency ablation of the three tumors in my liver will be done tomorrow @12:30. It'll probably take about an hour and then I stay in recovery for @ 6 hours before they send me home. I will keep you posted thereafter. Again I ask for prayers. I place my health, my family, my medical team, the procedure and its results in God's Hands. I consecrate them to Him and ask Him to bless them, for the praise and Glory of the Lord, in Jesus' name, I pray. Amen.
> To learn more about RFA, click here: http://www.uphs.upenn.edu/radiology/patient/services/ir/info/radio.html



Thank you for sharing this information. I have stage 4 colon cancer that resulted in me loosing half my liver. It is nice to know there are other options for if the cancer is found in my liver again. it is not an option to remove more of the liver.


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## LisaLuka

Hi, everyone--what a great idea for a thread!  I'm a breast cancer survivor, and my partner has twice battled a rare, aggressive cancer.  Fifteen years ago, they told me that she would be lucky to live two months.  I tell you this not to be a downer--but to say that we learned one thing from this experience: *Numbers are only numbers.  You are either 100% alive or 100% dead--and if you're reading this, you're 100% alive!  Don't let any other numbers matter.*

We've done Disney three times with cancer--we developed lots of tips and tricks, and I'd be happy to share them.  In the meantime, here's another lesson that brings me peace: 
*Cancer Cannot Stop Magic!!!*

Stay strong!
Lisa


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## ejayne2

Hi all
We will be at Disney Monday. My dad just finished a chemo treatment today and will fly down to Daytona to visit his siter Saturday. I have rented him a scooter. Any tips you all have for making this trip frat for him would be appreciated. Would you recommend trying to get a DAC or whatever they are called now. I would prefer him not to have to wait in long lines, trying to keep him away from crowds as much as possible since his immune system is compromised. I know That sounds dumb since we are going to Disney which will be crowed


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## Redwolf8812

ejayne2 - So sorry I saw your message this late.  You're probably in Disney having a great time as I type this.  The scooter is a great idea.  You have to wait in line with it and then as you get a little closer usually a cast member will pull your group out of line and put you somewhere closer.  Your dad may need naps so be prepared to leave a park in the middle of the day and go back later, or jut do parks in the am, and enjoy the hotel pool and relax in the pm.  Pack hand sanitizer and make sure he uses it before he eats.  Learn his cues - when he's tired, hungry, nauseous, needing pain meds, etc.  Disney is so disability-friendly - hopefully you're all having a great time, making plenty of memories!  Please post when you get back and let us know how you made out.

 Penny


----------



## Jade's Mom

I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast. 

I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.

I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.

I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.

Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.

Happy Halloween everyone!

Faith


----------



## limabeanmom2003

Jade's Mom said:


> I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.  I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.  I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.  I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.  Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.  Happy Halloween everyone!  Faith


Faith, you are an inspiration!  I needed to hear this today


----------



## DisDee

I'm thinking of all of you as you plan your upcoming trips. Make it happen and enjoy the magic!

We returned from ours on Oct. 22nd. It was a great trip except for the last day when I developed a GI bug. Ugh! Thankfully me husband bought some immodium so I was OK on the flight home. I should mention that 5 out of our group of 19 became ill.

Our trip included a stay at Vistana which I highly recommend. My highlight of the trip was Discovery Cove which I absolutely loved. I can cross this off my Life List (I don't believe in buckets). We also went to Sea World and Aquatica. I rented a wheelchair for MNSSHP in Magic Kingdom and we stayed till right before closing. It was a fun time sharing it with our 3 grandsons. We also enjoyed a lovely meal at Villa de Flora in the Gaylord Palms. It was just my husband and me and a romantic setting.

I had my 3 month tests last week-CT Scan and 2d Echo Cardiogram. The results were good and even better than expected on the CT. The largest lesion has shrunk by half and is substantially smaller than when I started chemo in July 2012. I had chemo yesterday at my new center MD Anderson at Cooper which is a beautiful center designed for patient comfort.

So with all that said we are planning our next vacation. 2 cruises back to back out of Cape Liberty on Explorer of the Seas to the Bahamas (Port Canaveral included) and the 2nd leg of our journey travels to Bermuda. We'll be celebrating our 40th anniversary.

I'm feeling very blessed that my health is improving! I'll be a 6 year survivor of Endometrial cancer in Dec. I've had 2 recurrences in the pelvic region and the last one made me a mental mess. I'm a realist when it comes to my health and I'm usually not big on statistics but when I read that the 5 year survival rate for recurrent endo. cancer is 18 %, I wanted to beat those odds. So, I'm hanging in there and doing everything my docs recommend and I'm also willing to do a clinical trial if necessary. 

Think happy, healthy and healing thoughts everyone! Thanks for reading my long-winded post.





A fun day at Discovery Cove-bad hair and no makeup but who cares!


----------



## Redwolf8812

Hi, DisDee, from a fellow native of South Jersey.  I loved your post.  Sounds like you all had a great time.  I've always kind of wanted to do Discovery Cove.  But the idea of squeezing into a wet suit - yeesh.  

- Penny


----------



## DisDee

Penny, I've put off going to Discovery Cove for years and I'm so glad I finally did it. The admission also includes 2 weeks of admission to Sea World and Aquatica around your Dis. Cove visit. We opted out of the Dolphin Experience since I really didn't have any interest in that. I wanted to snorkel with the fish and rays and that experience was wonderful. Well worth the price for me with the admission to the other parks. Plus you are fed all day long at DC-breakfast, lunch, snacks and beverages (including alcohol).

Now regarding the wet suit-there's no way I was wearing one of those. You can choose a vest like I did. It was very comfortable but you have to wear something for safety identification when you are in the pools.

DC is pure paradise! Even my skeptical husband thoroughly enjoyed himself. BTW, we bought an underwater camera for this trip and had a blast taking crazy pics while submerged.

All the best to you as you continue your treatment journey!


----------



## DisDee

Jade's Mom said:


> I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.
> 
> I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.
> 
> I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.
> 
> I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.
> 
> Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.
> 
> Happy Halloween everyone!
> 
> Faith



Faith, how did you scans go? My BIL is currently a patient at Penn too. He was diagnosed with Leukemia last January and is fighting a hard battle. He had a transplant in June and is still waiting for it to "take".

I'm trying to think of a way to help your daughter understand that a scooter would be for comfort purposes for you. Almost 16 is a hard age to understand the full picture but maybe you could explain how you could get more park time in if you have an easier time getting around. You could also tell her how people with conditions like severe arthritis, aging, asthma and many others also use scooters not just people who have cancer. I hope it works out for you and _your _needs are met as well as your daughter's.

BTW-we live across the river in Pennsauken so we're kinda like neighbors.

All the best to you as you continue treatment.


----------



## TreeSapp

Jade's Mom said:


> I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.
> 
> I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.
> 
> I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.
> 
> I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.
> 
> Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.
> 
> Happy Halloween everyone!
> 
> Faith



Embarrassed? Would she be embarrassed of you wearing glasses if your vision was poor? TONS of people in the parks use scooters, chairs, etc. you wouldn't stand out or draw any attention. We had a very hard time talking my FIL (stage 3 bone marrow cancer) into using a wheelchair, but when he did he was MUCH happier and more comfortable. He was embarrassed that he 'needed help', until he realized that absolutely no one took any special notice of him for using an aid.

There's a great disABILITIES thread on "what having a wheelchair means" on here, give it a once-over and maybe show it to DD?


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## DznyCrzy11

DebbieB said:
			
		

> My mom was first diagnosed with breast cancer in March 1996.   We had to cancel a Disney trip planned that month.  It didn't look good, it had spread into her lymph nodes.  She had surgery, radiation & chemo and I rescheduled the trip for November.  Her hair was just coming in, it was very short. She did not want to go, she was very depressed.   I pushed her and she went and it totally changed her outlook.  She realized she still had a life.   Unfortunately, it came back at the end of 1999.  She started on Herceptin and when that stopped working she went on various types of chemo.  We still managed our twice a year trips to WDW.  There were times when she needed to rest, we always took an afternoon break.   It eventually took over her liver and she passed away in 2005, almost 10 years after her diagnosis.   She told me before she died that she never regretted going on all our vacations even though sometimes it was hard.    It reminded me of the Leeann Womack song "if you have a choice to sit it out or dance, I hope you dance".



I am so glad you were able to take a few last trips with your mother!!  My mother was 1st diagnosed with cancer in 1986, just 3 yrs after I was born.  She had surgery and was told told if it didn't return in 12 yrs it more than likely would return at all, the 13th yr she found a lump.  In 2000 she was told she had 2 yrs left, she ended up living 7 more yrs.  I wish so much that I had a different perspective on life during that time (I was a teenager) and that we had enjoyed WDW more together in the later years, thankfully we did go plenty of times throughout the 90's.  I love that song by Leann Womack, it's such a great reminder.



			
				Redwolf8812 said:
			
		

> I just had an MRI of my liver this past Tuesday.  2 little tumors and 1 bigger one. Not as good as June but still better than back in March and about the same as this time last year. Looks like I'll be having another RFA (Radiofrequency Ablation) on those tumors then continue on with more chemo.  I'm trying to absorb all this so I can "pull my boot straps back up and get back in the saddle".  Thanks for all the prayers. I don't think remission or a cure is His Will for me right now. I still thank Him for all my Blessings.  I pray He allows us to have this upcoming vacation in Disney in December as planned, especially to spend the time with family and friends and see the Christmas lights.
> 
> God Bless.
> 
> - Penny



Penny, stay strong and I hope your December vacation to WDW goes as planned!!!



			
				LisaLuka said:
			
		

> Hi, everyone--what a great idea for a thread!  I'm a breast cancer survivor, and my partner has twice battled a rare, aggressive cancer.  Fifteen years ago, they told me that she would be lucky to live two months.  I tell you this not to be a downer--but to say that we learned one thing from this experience: Numbers are only numbers.  You are either 100% alive or 100% dead--and if you're reading this, you're 100% alive!  Don't let any other numbers matter.
> 
> We've done Disney three times with cancer--we developed lots of tips and tricks, and I'd be happy to share them.  In the meantime, here's another lesson that brings me peace:
> Cancer Cannot Stop Magic!!!
> 
> Stay strong!
> Lisa



Lisa that is amazing!!!  I hope you both continue succeeding in your fight!!  



			
				Jade's Mom said:
			
		

> I stumbled onto to this thread and so glad I did. I'll try to keep my introduction quick. Diagnosed with metastatic breast cancer December 2010. Found the BC in my bones before it was found in my breast.
> 
> I've been to WDW 4 times since then (DD and myself and various friends and/or family) and with varying degree of success. March 2011, 5 days in WDW and 2 days at Universal Studio. I was still suffering from severe depression and it was too close to my round of radiation. Plus developed shingles on the trip. March 2012, we spent 5 days in WDW and 3 in Sarasota, March 2013, 2 day WDW, 3 days Clearwater Beach and Phillies Spring Training and 2 days Universal Studio. June 2013 4 days in WDW.
> 
> I have a wonderful husband who is a Philadelphia police officer and a soon to be 16 year old daughter. She is my biggest reason for living and when I was diagnosed, she was 13, the same age I was when my father died of stage 4 prostate cancer.
> 
> I'm planning a trip for March 2014 and the biggest issue I have is getting around the park. I know she's embarrassed when I use a cane so I know a scooter would freak her out. When I mention using a scooter, she always asks if I'm going to die and I always tell her not today.
> 
> Getting myself around this morning for my quarterly CT and bone scans at Penn (shot out to my fellow Penn patients). I just came off a clinical trial (rapid growth in my shoulder and I needed radiation for the pain) so I'm preparing for a change in my meds.
> 
> Happy Halloween everyone!
> 
> Faith



Hi Faith, when I was 16 my mother was also battling cancer.  Unfortunately at 16, at least I know for me, I was more concerned with myself.  I would have probably been the same as your daughter at age 16 if my mother had needed a wheelchair.  Now, I would give anything to have my mom back and take a trip to WDW, even if it meant visiting in a wheelchair.   Maybe explain to your daughter that you get tired very easily and with the wheelchair you will be more comfortable and able to spend more time in the parks.  I hope it all works out!!

Hugs to everyone!

Sent from my Galaxy SII


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## slcmom

Hey, Faith, what if you remind your daughter that a typical WDW  day involves walking 10 miles? That sobering number might help her understand why it would help you so much to not have to invest all your available energy into just putting one foot in front of the other. Good luck!


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## Redwolf8812

As a follow-up to the liver ablation, I'm having an MRI tomorrow to see what the burned tumors look like.  If everything looks good and there's no new growth, I'll stay on my current chemo - TDM1.  If not, my oncologist would like me to go on another clinical trial.  So, I'm praying that God directs my treatment for His Will and for the Grace to accept His Will.  TDM1 has been fairly easy to tolerate so I wouldn't mind staying on it, but it's in His Hands.  Please continue to keep me and my family in your prayers.  Thank you!

- Penny


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## Redwolf8812

So let me see if I can explain my situation. The liver MRI from Wednesday the 13th of November doesn't seem to show "new" tumors but the tumor that was ablated has an area on its rim that may or may not be viable (live). So while the oncologist waits for another radiologist to read the scan I'm staying on the current chemo. Further decisions will be made based on the other radiologist's reading. Everything ran so late that I couldn't get chemo that day so I had to go back in the am for treatment. Praise God for this good report! Thanks for all the prayers - please carry on!

- Penny


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## Redwolf8812

We just got back from our little Christmas vacation in Walt Disney World - it was beautiful!  So glad we went.  God blessed us with more wonderful memories.  How is everyone?  I start a new clinical trial today...

- Penny


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## SueM in MN

Glad to hear you had a special time on your holiday trip.

Good luck on your new treatment.


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## Redwolf8812

Just bumping up this thread in case there's anyone out there looking for it.



- Penny


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## roadtripper

I'm really glad you bumped this up Redwolf8812--I just found it today and was a few pages in and wondering how you were doing. Happy to see you just had a great trip. 

Not really relevant, but we brought Mom and Dad a few times--we always had fun. Last winter, Mom had a cough that wouldn't go away, and got diagnosed with lung cancer (nonsmoker). By the time they found it, it was in her bones. Six weeks from diagnosis until we lost her last Feb. I admire all of you still fighting for every day. 

Dad is coming with us again next week--he can use a little magic right about now.


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## dizprincess27

Does anyone know if they are still giving DAS for a dx of cancer?  I've been a few times before with it and will still be in treatment when I go in May so I was just wondering if anything has changed since October.


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## StitchesGr8Fan

dizprincess27 said:


> Does anyone know if they are still giving DAS for a dx of cancer?  I've been a few times before with it and will still be in treatment when I go in May so I was just wondering if anything has changed since October.



It's not given based on a diagnosis. It's given based on an inability to wait in the regular line for reasons besides mobility and stamina (which are accommodated with a wheelchair or ECV in most regular lines).


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## dizprincess27

StitchesGr8Fan said:


> It's not given based on a diagnosis. It's given based on an inability to wait in the regular line for reasons besides mobility and stamina (which are accommodated with a wheelchair or ECV in most regular lines).



So how or why was I provided with it for my last 3 trips


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## StitchesGr8Fan

dizprincess27 said:


> So how or why was I provided with it for my last 3 trips



They overhauled the system in September/October for multiple reasons. It went from the GAC to the DAS. There is a sticky that explains the new DAS and how it works. If you have reasons why you can't wait in line besides stamina or mobility you might qualify for the new pass. But they don't need to know what your diagnosis is because one person undergoing treatment for cancer needs different accommodations in line than someone else undergoing treatment for cancer. They need to know what your individual accommodation needs are.


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## Redwolf8812

MRI tonight - prayers welcome.

"Dear Lord, thank You for all Your miracles, cures, treatments, and advances in modern medicines.  Thank You for all the tests and treatments that You've used to extend my stay here with family and friends.  Thank You for the Gift of Salvation through Your Son, Jesus Christ. Please forgive me for all my sins - I am truly sorry for offending You, My God.   Lord Jesus Christ, Son of God, have mercy on me a sinner.  I pray of course for great results from tonight's MRI, but it it's not Your Will, please grant me the Grace to accept it and please continue to guide me, my family, and medical team so that Your Will is accomplished through me.  I offer up all my sufferings for the intentions of my heart, which You know, Lord.  All these things I pray for the Praise and Glory of Your Mighty Name.  In Jesus' Mighty Name, I pray.  Amen."

- Penny


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## Redwolf8812

MRI Report - "Mild interval decrease of areas of recurrent tumor"!!!

Praise God! Thank You, Jesus!

Thank you all for your continued prayers - meeting with doctor tomorrow.


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## Redwolf8812

Even tho this chemo is rough on me the oncologist wants to stay the course since it's working. I say Thank You, Lord! She also managed to get FDA approval for my compassionate use of a treatment that's still in trials but it's for genetic breast cancers (Veliparib). I'm also still thinking of going back to the interventional radiologist to discuss chemoembolization, radioembolization, or stereotactic body radiation therapy. Thank You, Lord for my medical team! Please pray for guidance and if course God's Will. Thanks.

I don't usually get yesterday's bloodwork results so quickly, but the NP wanted me to see how good they are. The liver function numbers are down again! Thank You, Lord! Praise God!

Enjoying this beautiful morning - there's a gorgeous wild Tom turkey wandering around our yard. Sean saw him with all his feathers up but I missed it. Thank You, Lord, for Your wonderful creatures!

"The wolf shall dwell with the lamb,

and the leopard shall lie down with the kid,

and the calf and the lion and the fatling together,

and a little child shall lead them."

(Isaiah 11:6 RSV)

- Penny


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## mom23guys2

I wanted to thank everyone on this thread. You were a tremendous help to me. My friends and I have been going to WDW every year for the past 25 years. our families have enjoyed wonderful times together. As our children have grown, we started going together just as three adult couples still every year but now at off season. My friend was diagnosed with stage three melanoma almost 5 years ago. We continued to go to WDW but just planned around her treatments. In 2012 when we went she didn't get to go on many things but still had fun. She really enjoyed Toy Story but sadly couldn't get a fast pass because she just couldn't get to the park early enough. This past November we were going and she was late stage 4. She was disappointed about not being able to do Toy Story anymore because of the lines. I started researching  on here and found out about the DAS. There were problems with that since again we didn't get to the parks until late in the afternoon but it was at least something, We went to GR in HS. I knew from here to mention that she couldn't spend time in the parks for long. The cast member at guest relations was wonderful(it was obvious that she was undergoing chemo) He gave her about 8 passes to get on any ride just as if she had fast passes(there were 4 of us) she was able to go on Toy Story twice and had a wonderful time. She did so well we went in again to MK a few days later and she was able to see the new Mermaid ride.
I'm about to get ready for her funeral now but those wonderful memories we had from this last trip were precious. She never stopped trying to beat this disease.
Again, thank you to those on this thread who helped present so much info that
I would never have known about.Good luck to all who are still fighting the good fight. Bless you.


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## Redwolf8812

bump


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## robsterstu

Looking to take a cruise in March.  Waiting for my first scan of my lung cancer tomorrow.  Walking distances is a problem.  Anyone with advice on doing DCL with this limitation.  We are doing the Magic because our experience with the Dream meant it would be too much.
Thanks,
Rob
Michigan


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## Redwolf8812

Welcome, Rob.  I've never been on a cruise but I'm sure someone will come along to give you advice.  I imagine they have wheelchairs you can rent for the duration of your vacation.  Keep us posted.

Prayers for all,
Penny


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