I have been diagnosed with Glioblastoma.

[nkjzmom]

Last month I was diagnosed with stage 4 Glioblastoma. I had surgery during which the surgeon was able to remove almost all of the tumor. The Doctors suggest radiation and chemotherapy to treat but they also say this is a cancer that does not go into remission. It is more a matter of WHEN not if it comes back.

I am looking into alternative treatments and am interested in what I've heard of Dr. Burzynski in Houston, Texas. Is anyone familiar with him?

 

[Pea-n-Me]

Take care of yourself while you do your research. It's so hard to read all the bad stuff. Will keep you in my prayers (if that's ok).

 

[nkjzmom]

Thank you so much...prayers are much appreciated. I spent the whole first night in ICU in prayer. I recovered from surgery very quickly and I'm certain it was due to good care and prayer.

The news about this cancer is bad. The side effects from treatment are not good either.

 

[DisMN]

Not familiar with that Doctor but the widely respected MD Anderson cancer center is in Houston. Is he affiliated with them?

Best of luck with your treatments!

 

[focusondisney]

I don't have any information for you but wanted to send my prayers & hugs to you!

 

[DisMN]

Thank you so much...prayers are much appreciated. I spent the whole first night in ICU in prayer. I recovered from surgery very quickly and I'm certain it was due to good care and prayer.

The news about this cancer is bad. The side effects from treatment are not good either.

Prayer is a wonderful thing isn't it? I'll keep you in mine.

 

[tinkntraining]

I don't have any info for you. Just wanted to tell you that I'm sorry for what you're going through and sending you hugs and prayers.

 

[nkjzmom]

Thank you!

DisMN...he is not affiliated with them as far as I know. UAB, the hospital I was going through, was involved in some chemical trials with MD Anderson. We have found that the tumor I had will not be as easily treated by chemotherapy as we had hoped. The trial for patients in my situation is full here at UAB so we are looking at other universities as well as Dr. Burzynski.

 

[HeatherC]

Sending prayers to you!! Wish I could help more!

 

[taylor3297]

Have you tried Duke Hospital in Durham, NC? A neighbor is going through the samething right now and Duke has given him the best treatment. His doctor is the sameone who treated Ted Kennedy.

 

[Deb in IA]

I'm so sorry to hear this.

Will keep you in our thoughts and prayers.

 

[NikitaZee]

Oh, no. I was just re-reading your post about migraines, and how you didn't feel that your doctor's diagnosis was quite right. I'm so terribly sorry to hear your news today. I hope you find a great hospital with a wonderful chemical trial that gives you hope and a longer life.

 

[3prettyprincesses]

I am so sorry. I've been following a young girl's cancer journey as she deals with a grade 4 glioblastoma. Here's a link to her page detailing her treatment. She was diagnosed in 2007 and is doing well:

https://www.carepages.com/carepages/KellyLaude/patient

Kelly's Story

Kelly was diagnosed with Glioblastoma Multiforme, a grade 4 brain tumor, in July, 2007. She had a complete resection to remove the tumor. After 6 weeks of radiation and oral chemo, her tumor recurred in October, 2007. She had another successful complete resection. Unfortunately, with an aggressive tumor like this, we know there are cancer cells left behind. So she had gamma knife radiosurgery to attempt to create a "boundary" around the tumor bed to keep the cancer cells from spreading to other parts of her brain. She then changed her chemotherapy protocol to Irinotecan (CPT-11) and avastin and she has been receiving these IV chemo treatments every other week since then. It has been successful for her so far and her MRIs have shown no visible sign of tumor. As of February '09, Kelly changed from outpatient chemo to inpatient chemo treatments because she gets so sick from the cumulative effects of 17 months of Irinotecan. She spends a day receving chemo, then 2 days in the hospital recovering with IV hydration and meds.

Her ocologist calls her a Miracle. We are continuing treatment to keep her a miracle!

To read previous updates and photos, go to our old website: http://thelaudes.blogspot.com/

 

[RadioNate]

Actually, I am familiar with Dr. Burzynski. My Aunt went to him after she was diagnosed terminal. She lived about 18 more months (she was given 3 months by her conventional Dr's in Chicago.)

The treatments DID help. She was not cured but she had a good quality of life while seeing him.

I can find out more from my cousin. I'm supposed to talk to her anyway. She and her DH both work for a drug company and she is very 'into' alternative treatments.

I think they were happy with the care they received. I do know that it was VERY expensive.

 

[maiyasgram]

Amy-sorry to hear of your diagnosis. When my DH was diagnosed with cancer last year we chose to be treated at Dana Farber Cancer Inst. in Boston MA. I cannot say enough of their staff and the treatment we recieved. We will keep you and your family in our prayers.

Cherie

 

[Laura]

I am no help with advice but I wanted to let you know I'm certainly sending positive thoughts your way.

 

[nkjzmom]

Have you tried Duke Hospital in Durham, NC? A neighbor is going through the samething right now and Duke has given him the best treatment. His doctor is the sameone who treated Ted Kennedy.

Actually, Duke has set up an appt. for us next week. We are first hoping to get into Dr. Burzynski's clinic but if not we will visit Duke. We've spent 2 days this week just getting my medical information sent to all of these places.

Oh, no. I was just re-reading your post about migraines, and how you didn't feel that your doctor's diagnosis was quite right. I'm so terribly sorry to hear your news today. I hope you find a great hospital with a wonderful chemical trial that gives you hope and a longer life.

After that Doctor treated me for sinusitis with no changes we left him for an Internal Medicine specialist. Our new Doctor sent me for an MRI immediately and within 2 weeks I was having the surgery. I'm so thankful we changed.

I am so sorry. I've been following a young girl's cancer journey as she deals with a grade 4 glioblastoma. Here's a link to her page detailing her treatment. She was diagnosed in 2007 and is doing well:

https://www.carepages.com/carepages/KellyLaude/patient

Kelly's Story

Kelly was diagnosed with Glioblastoma Multiforme, a grade 4 brain tumor, in July, 2007. She had a complete resection to remove the tumor. After 6 weeks of radiation and oral chemo, her tumor recurred in October, 2007. She had another successful complete resection. Unfortunately, with an aggressive tumor like this, we know there are cancer cells left behind. So she had gamma knife radiosurgery to attempt to create a "boundary" around the tumor bed to keep the cancer cells from spreading to other parts of her brain. She then changed her chemotherapy protocol to Irinotecan (CPT-11) and avastin and she has been receiving these IV chemo treatments every other week since then. It has been successful for her so far and her MRIs have shown no visible sign of tumor. As of February '09, Kelly changed from outpatient chemo to inpatient chemo treatments because she gets so sick from the cumulative effects of 17 months of Irinotecan. She spends a day receving chemo, then 2 days in the hospital recovering with IV hydration and meds.

Her ocologist calls her a Miracle. We are continuing treatment to keep her a miracle!

To read previous updates and photos, go to our old website: http://thelaudes.blogspot.com/http://thelaudes.blogspot.com/

Thank you for sharing her story. I will read more!

Actually, I am familiar with Dr. Burzynski. My Aunt went to him after she was diagnosed terminal. She lived about 18 more months (she was given 3 months by her conventional Dr's in Chicago.)

The treatments DID help. She was not cured but she had a good quality of life while seeing him.

I can find out more from my cousin. I'm supposed to talk to her anyway. She and her DH both work for a drug company and she is very 'into' alternative treatments.

I think they were happy with the care they received. I do know that it was VERY expensive.

If you don't mind I'd love to hear more about their experience. Thank you so much for replying!

Thank you everyone for the offers of prayers and good thoughts. As I was recovering in the hospital I just kept praying that I could return home to be a whole wife to my husband and a whole mother to my children. They are my life. We were able to come home Christmas Eve! The side effects that my Neurosurgeon thought were possible (weakness and vision problems on my left side) have not been a problem at all!

 

[Mickey Fliers]

My FIL was diagnosed with Glioblastoma in 2000. I am sure that the treatments have changed a lot since then. He did go through stem cell replacement.

I will absolutely keep you in my prayers!

 

[BCV513]

My cousin was diagnosed with an incurable malignant brain tumor (I'm sorry, I don't know the exact type.) After the doctors here in Boston had told him there was nothing they could do, he went down to Duke. They operated and he is now completely healthy. It's been over five years now.

I'll keep you in my thoughts and prayers.

 

[wdwfan16]

I will keep you in my prayers and hope for a miracle.