Hi, all~
I don't know where else to turn, so I am hoping some of you might be willing to share some insight. I know this is long, but please bear with me if possible.
DH's DD was diagnosed with melanoma just days before Christmas. It came as a complete surprise, and was diagnosed as a result of a small lump found near her groin. The CT, MRI and PET scans showed she was Stage IV, and it had spread to numerous bones, all her lymph nodes and through her abdomen, but no major organs at the time. She refused to even consider a second opinion, and she was enrolled in a clinical trial. She developed a tumor in her lower abdomen (externally visible and increasingly debilitating) that grew at an alarming rate and began to weep and then bleed quite a bit. After two courses of the trial treatment she was removed from the trial due to the tumor. The dr then decided to surgically remove the tumor, a move that until then they kept saying was the worst possible move. After 5+ weeks of recovery, they proposed IL2 (interleukin) treatment. She had also developed numerous new tumors in her abdomen and groin. Unfortunately, she was not strong enough to start the treatment so in the meanwhile they started her on an interim treatment that included thalidomide and two other chemos (one oral, one IV) while hopefully she built up her strength. That has not happened and she has grown progressively weaker, and new spots were also found in her lungs. Her numbers have been so low she has required regular transfusions, has been hospitalized several times (a week or more at a time) for infections and/or complications. The dr told her "it's not over", but recommended she get her affairs in order. She was put on a "new" drug Gleevec (I know it's not new - that was a quote from the dr) but since then had been taken on and off the meds temporarily due to the low counts etc. She began retaining water - first her legs (they are now so swollen she cannot even bend them and they must be lifted in to the car or on to the wheelchair, etc) and now it is happening to her arms and hands. She is up >80 lbs with the water weight, she can barely walk and struggles to breathe while sleeping and after even a walk to the bathroom and back. She cannot even stand long enough to get weighed at her appts.
She was hospitalized again due to an infection, and remained there for a week. Her tumors are so bad they require special dressings that must be changed at least 2x a day (should be 3, but the insurance will only pay for 2x) and she requires lots of help for the most basic tasks. There is no question she can not be alone any longer, so she was to come and stay with us when released from the hospital - she lives with her boyfriend (for 10+ years) but he works during the day and DH has a more flexible schedule. Sadly, upon hearing of this arrangement, DH's ex pitched a fit and stormed out of the hospital. Consequently, DH's DD has returned to her own home instead where we cannot always be there to help.
The doctor has given her two choices: get off everything and they will make her as comfortable as possible through the end or go back on everything and double the Gleevec (her only hope, but essentially a "hail Mary pass") and deal with the severe side effects - she has chosen the latter for now.
The dr has told DH and me that the Gleevec is her only hope, that the fluid buildup, general weakness and breathing problems are from both the spreading cancer and her systems shutting down. He also said the fluid buildup is mainly from the tumors blocking the circulation. We asked about a nurse at home, and was advised that is up to the ins co. The ins co says she would qualify for hospice and nursing visits if her est life is 6 mos or less.
Now, finally the issue(s):during a discussion re: nursing care DH asked his DD about hospice, but she responded "that's the next level - I'm not there yet." Now, it is clear she needs more care than we can provide, but in order to do so it must be through hospice. While she would likely meet the criteria, she does not realize her time is likely quite limited. (When asked, the dr told DH and me that short of a miracle (with the Gleevec) she'll have approx 6 weeks or so.) This, in spite of having been told to "get [her] affairs in order", her obvious physical problems, the recent treatment choices given, the doctor telling her flat out that Gleevec is her only hope and the obvious increasing size and deteriorating condition of her visible tumors.
I don't know what to do. She absolutely needs more care at home than we can give, and there are times no one is with her (she has refused the offers of some people, including from her boyfriend's father). The only way I see to do this is via hospice, yet she is somehow unaware - or is just choosing not to see - that her prognosis is so poor she would qualify. Should DH be very frank with her and relay the conversation we had with the doctor so we can move forward with hospice or should we just let her believe what she believes and struggle being alone until she finally sees how bad she really is?
Please, I apologize again for the length, but any feedback would be wonderful right now!
Thanks so much -
Laurie
I don't know where else to turn, so I am hoping some of you might be willing to share some insight. I know this is long, but please bear with me if possible.
DH's DD was diagnosed with melanoma just days before Christmas. It came as a complete surprise, and was diagnosed as a result of a small lump found near her groin. The CT, MRI and PET scans showed she was Stage IV, and it had spread to numerous bones, all her lymph nodes and through her abdomen, but no major organs at the time. She refused to even consider a second opinion, and she was enrolled in a clinical trial. She developed a tumor in her lower abdomen (externally visible and increasingly debilitating) that grew at an alarming rate and began to weep and then bleed quite a bit. After two courses of the trial treatment she was removed from the trial due to the tumor. The dr then decided to surgically remove the tumor, a move that until then they kept saying was the worst possible move. After 5+ weeks of recovery, they proposed IL2 (interleukin) treatment. She had also developed numerous new tumors in her abdomen and groin. Unfortunately, she was not strong enough to start the treatment so in the meanwhile they started her on an interim treatment that included thalidomide and two other chemos (one oral, one IV) while hopefully she built up her strength. That has not happened and she has grown progressively weaker, and new spots were also found in her lungs. Her numbers have been so low she has required regular transfusions, has been hospitalized several times (a week or more at a time) for infections and/or complications. The dr told her "it's not over", but recommended she get her affairs in order. She was put on a "new" drug Gleevec (I know it's not new - that was a quote from the dr) but since then had been taken on and off the meds temporarily due to the low counts etc. She began retaining water - first her legs (they are now so swollen she cannot even bend them and they must be lifted in to the car or on to the wheelchair, etc) and now it is happening to her arms and hands. She is up >80 lbs with the water weight, she can barely walk and struggles to breathe while sleeping and after even a walk to the bathroom and back. She cannot even stand long enough to get weighed at her appts.
She was hospitalized again due to an infection, and remained there for a week. Her tumors are so bad they require special dressings that must be changed at least 2x a day (should be 3, but the insurance will only pay for 2x) and she requires lots of help for the most basic tasks. There is no question she can not be alone any longer, so she was to come and stay with us when released from the hospital - she lives with her boyfriend (for 10+ years) but he works during the day and DH has a more flexible schedule. Sadly, upon hearing of this arrangement, DH's ex pitched a fit and stormed out of the hospital. Consequently, DH's DD has returned to her own home instead where we cannot always be there to help.
The doctor has given her two choices: get off everything and they will make her as comfortable as possible through the end or go back on everything and double the Gleevec (her only hope, but essentially a "hail Mary pass") and deal with the severe side effects - she has chosen the latter for now.
The dr has told DH and me that the Gleevec is her only hope, that the fluid buildup, general weakness and breathing problems are from both the spreading cancer and her systems shutting down. He also said the fluid buildup is mainly from the tumors blocking the circulation. We asked about a nurse at home, and was advised that is up to the ins co. The ins co says she would qualify for hospice and nursing visits if her est life is 6 mos or less.
Now, finally the issue(s):during a discussion re: nursing care DH asked his DD about hospice, but she responded "that's the next level - I'm not there yet." Now, it is clear she needs more care than we can provide, but in order to do so it must be through hospice. While she would likely meet the criteria, she does not realize her time is likely quite limited. (When asked, the dr told DH and me that short of a miracle (with the Gleevec) she'll have approx 6 weeks or so.) This, in spite of having been told to "get [her] affairs in order", her obvious physical problems, the recent treatment choices given, the doctor telling her flat out that Gleevec is her only hope and the obvious increasing size and deteriorating condition of her visible tumors.
I don't know what to do. She absolutely needs more care at home than we can give, and there are times no one is with her (she has refused the offers of some people, including from her boyfriend's father). The only way I see to do this is via hospice, yet she is somehow unaware - or is just choosing not to see - that her prognosis is so poor she would qualify. Should DH be very frank with her and relay the conversation we had with the doctor so we can move forward with hospice or should we just let her believe what she believes and struggle being alone until she finally sees how bad she really is?
Please, I apologize again for the length, but any feedback would be wonderful right now!
Thanks so much -
Laurie
)
