My Father is 84 years old. He has Alzheimers / dementia and was diagnosed with multiple myeloma 3 years ago. Up until recently, we were just monitoring things. Then, 1 month ago, his bloodwork came back indicating that we needed to start chemo. He received 1 shot of Velcade and Zometa and crashed for 5 days. His Alzheimers reacted as if he was in the final stages. He couldn't walk, sit up, figure out how to use the bathroom, etc. It was horrible. Then he bounced back.
Everyone at my Dad's VA facility thought that hospice is the best choice for him ... EXCEPT his oncologist. She wants to keep giving treatments and, even though we have told her that we have chosen hospice, she won't stop calling and making future appointments for bloodwork, MRI, and possible treatment.
Has anyone ever experienced anything like this?
I am so upset having to make life and death decisions for my Dad because he is so confused and doesn't know what is going on.
Hospice claims that he will be comfortable and have quality of life, and doctor claims that treatment will help him with pain and infection, although it is being given just as a palliative treatment.
Everytime I think that I have made my decision, I am swayed by the doctor.
Any thoughts?
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Re: Hospice or treatment for my 84-year-old father?
Rene, sorry to hear what you are going through. Your father is 84 years old, I am sure he"s had a good life. I would make his life comfortable now. You do what you believe he would want and be at peace with yourself.
That isn't much of a doctor to keep calling, I think she is more interested in money. We were told, from the start, that my husband could stop treatment at anytime. He's 71. The next time she calls I would tell her you were going to report her to the head of the hospital.
Enjoy the days your father has left, God bless you and your family.
That isn't much of a doctor to keep calling, I think she is more interested in money. We were told, from the start, that my husband could stop treatment at anytime. He's 71. The next time she calls I would tell her you were going to report her to the head of the hospital.
Enjoy the days your father has left, God bless you and your family.
Re: Hospice or treatment for my 84-year-old father?
My understanding of 'hospice', at least where I live in Canada, is that when entering that sort of a facility, you must give up all of your chemotherapy treatments. I have had friends with myeloma who entered hospice care, at end of life. I know that they received good palliative care there, and the family and friends could come and visit too, as long as the patient felt up to having visitors. From what I read, hospice care usually only goes on for a few weeks or less.
i just have some reservations about giving up on all meds, though. I think it is possible that a treatment of Revlimid, for example, which is quite tolerable and is an oral chemotherapy, could still be taken for an elderly patient. Untreated myeloma could be awful, actually.
I am sure it is a difficult decision to make, though. Best wishes, and I hope that you and your family decide what is best for your father.
i just have some reservations about giving up on all meds, though. I think it is possible that a treatment of Revlimid, for example, which is quite tolerable and is an oral chemotherapy, could still be taken for an elderly patient. Untreated myeloma could be awful, actually.
I am sure it is a difficult decision to make, though. Best wishes, and I hope that you and your family decide what is best for your father.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hospice or treatment for my 84-year-old father?
I would suggest asking for a new doctor. My mother was in a horrible car accident last year, with severe internal injuries, many broken bones and followed by no few than 5 strokes (we think a stroke might have caused the accident) over the next few days. And yet, when we asked about her quality of life if we followed the *extreme* intervention the surgeon wanted to try, he said "most families would want to try to save their mother, not kill her." Needless to say, we got a new doctor.
The new doctor laid out exactly what her quality of life (or lack thereof) would be, and we were able to better evaluate what we were willing to put her through and what we weren't. We were able to set clear boundaries as to what they could try and what they couldn't. After many discussions and evaluations (and as she got progressively worse), he agreed unequivocally that the quality of life she would have wanted was not possible for her and we were able to let her peacefully go.
I hope that you will be able to find a doctor who will consider your father's quality of life as a first priority, not her need to "save" him.
The new doctor laid out exactly what her quality of life (or lack thereof) would be, and we were able to better evaluate what we were willing to put her through and what we weren't. We were able to set clear boundaries as to what they could try and what they couldn't. After many discussions and evaluations (and as she got progressively worse), he agreed unequivocally that the quality of life she would have wanted was not possible for her and we were able to let her peacefully go.
I hope that you will be able to find a doctor who will consider your father's quality of life as a first priority, not her need to "save" him.
Re: Hospice or treatment for my 84-year-old father?
Rene,
You have gotten a lot of good advice so far, even if it seems a bit confusing and perhaps even contradictory.
I just want to add that, in making your decision, please keep in mind something that Nancy suggested, which is that there are treatments for multiple myeloma that are not as difficult, and full of side effects, like what you normally think of when you hear the word "chemotherapy." In fact, it is somewhat misleading to call some of the newer therapies "chemotherapy", because they are more targeted specifically against myeloma than older chemotherapies, which killed all fast growing cells in the body, not just cancer cells.
Your father's initial reaction to treatment with Velcade was probably the result of the drug being so effective in treating disease which, up to that point, had not been treated.
I realize there are other considerations, particularly your father's Alzheimer's, that you are taking into account as you think about what you and your family want to do. But please do not think that treatment with myeloma will mean unrelenting pain and agony for your father. If you work with the right doctor, preferably a myeloma specialist, this does not have to be the case.
Good luck!
You have gotten a lot of good advice so far, even if it seems a bit confusing and perhaps even contradictory.
I just want to add that, in making your decision, please keep in mind something that Nancy suggested, which is that there are treatments for multiple myeloma that are not as difficult, and full of side effects, like what you normally think of when you hear the word "chemotherapy." In fact, it is somewhat misleading to call some of the newer therapies "chemotherapy", because they are more targeted specifically against myeloma than older chemotherapies, which killed all fast growing cells in the body, not just cancer cells.
Your father's initial reaction to treatment with Velcade was probably the result of the drug being so effective in treating disease which, up to that point, had not been treated.
I realize there are other considerations, particularly your father's Alzheimer's, that you are taking into account as you think about what you and your family want to do. But please do not think that treatment with myeloma will mean unrelenting pain and agony for your father. If you work with the right doctor, preferably a myeloma specialist, this does not have to be the case.
Good luck!
Re: Hospice or treatment for my 84-year-old father?
If he has an advanced directive, or you had conversations with him on the subject while he was lucid, then that is what you would go by. If not, then it's a hard decision.
Do you know what functionality he needs to be happy? I'd heard a story recently about a conversation someone had with his father who had defined his minimum quality of life as being able to watch football and eat chocolate ice cream. Not a bad definition, since it defined mental alertness and physical pleasure. Do you have any idea what your father's definition might be? At some point, the Alzheimers is going to take that away from him. How close is he to that point?
Some of the drugs prescribed for multiple myeloma are palliative. Zometa strengthens the bones, which could help prevent painful fractures. It also decreases the calcium in the blood, which could help with alertness. It doesn't stop the progression of the disease. People are also frequently prescribed acyclovir to prevent shingles from taking advantage of their compromised immune system.
How long does the oncologist think he's likely to last if untreated? Could be several years, which is plenty of time to develop various painful conditions you'd like him to avoid. Chemo for multiple myeloma isn't like chemo for other cancers. Mostly it is pills or, in the case of Velcade, it is a quick injection. Mostly it is well tolerated. Sometimes not. If he is treated, he could live for many years. Long enough to die of Alzheimer's or some other condition that fate has in store for him. Some things are better deaths than complications of multiple myeloma, but many are worse.
I wish you the strength you need to make this hard series of decisions.
Do you know what functionality he needs to be happy? I'd heard a story recently about a conversation someone had with his father who had defined his minimum quality of life as being able to watch football and eat chocolate ice cream. Not a bad definition, since it defined mental alertness and physical pleasure. Do you have any idea what your father's definition might be? At some point, the Alzheimers is going to take that away from him. How close is he to that point?
Some of the drugs prescribed for multiple myeloma are palliative. Zometa strengthens the bones, which could help prevent painful fractures. It also decreases the calcium in the blood, which could help with alertness. It doesn't stop the progression of the disease. People are also frequently prescribed acyclovir to prevent shingles from taking advantage of their compromised immune system.
How long does the oncologist think he's likely to last if untreated? Could be several years, which is plenty of time to develop various painful conditions you'd like him to avoid. Chemo for multiple myeloma isn't like chemo for other cancers. Mostly it is pills or, in the case of Velcade, it is a quick injection. Mostly it is well tolerated. Sometimes not. If he is treated, he could live for many years. Long enough to die of Alzheimer's or some other condition that fate has in store for him. Some things are better deaths than complications of multiple myeloma, but many are worse.
I wish you the strength you need to make this hard series of decisions.
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JanInWloo - When were you/they diagnosed?: 2005
- Age at diagnosis: 51
Re: Hospice or treatment for my 84-year-old father?
Hello,
I am a myeloma patient, but I also happened to watch my father-in-law deal with Alzheimer's for eight years until he died, so I have some experience with both diseases.
I am not at all surprised your father reacted so strongly to Velcade. For some unknown reason, patients with Alzheimer's react very negatively to any assault on the body. For example, it is very common for a UTI to cause them to temporarily look like they had a stroke. Your father's reaction to Velcade may or may not continue with future treatments; the only way to know would be to try.
Most people do not experience serious side effects with subcutaneous Velcade (did he have that, or intravenous?) especially if careful to be over-hydrated (if I'm not, I might get diarrhea). I hear many people say the same of Revlimid.
Rather than seeking cure, the doctor might be recommending treatment because cancer treatment can be palliative. Personally, I felt better after my chemo started because myeloma so negatively affected my blood counts that I felt lousy. And as someone else mentioned, Zometa reduces bone pain.
The only reason I can think the doctor might be asking for an MRI is to see whether there are any fractures that need treatment. If he has vertebrae compression fractures, they are extremely painful, and can be treated very quickly and easily with kyphoplasty.
However, aside from things that might make him more comfortable (Zometa, kyphoplasty, and Velcade or Revlimid, if he can tolerate it), I would be disinclined toward aggressive treatments. I would not put a person with Alzheimer's through the intensive chemo associated with induction chemo. They don't understand so much already, and the intensive treatment can be pretty tough.
Best wishes with your decision. Ginny
I am a myeloma patient, but I also happened to watch my father-in-law deal with Alzheimer's for eight years until he died, so I have some experience with both diseases.
I am not at all surprised your father reacted so strongly to Velcade. For some unknown reason, patients with Alzheimer's react very negatively to any assault on the body. For example, it is very common for a UTI to cause them to temporarily look like they had a stroke. Your father's reaction to Velcade may or may not continue with future treatments; the only way to know would be to try.
Most people do not experience serious side effects with subcutaneous Velcade (did he have that, or intravenous?) especially if careful to be over-hydrated (if I'm not, I might get diarrhea). I hear many people say the same of Revlimid.
Rather than seeking cure, the doctor might be recommending treatment because cancer treatment can be palliative. Personally, I felt better after my chemo started because myeloma so negatively affected my blood counts that I felt lousy. And as someone else mentioned, Zometa reduces bone pain.
The only reason I can think the doctor might be asking for an MRI is to see whether there are any fractures that need treatment. If he has vertebrae compression fractures, they are extremely painful, and can be treated very quickly and easily with kyphoplasty.
However, aside from things that might make him more comfortable (Zometa, kyphoplasty, and Velcade or Revlimid, if he can tolerate it), I would be disinclined toward aggressive treatments. I would not put a person with Alzheimer's through the intensive chemo associated with induction chemo. They don't understand so much already, and the intensive treatment can be pretty tough.
Best wishes with your decision. Ginny
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Hospice or treatment for my 84-year-old father?
Dear Rene:
My father also died when Alzheimer's was his predominant condition. You may feel different, but in my view, your father can no longer appreciate the quality of his life in relative terms, as in "I am prepared to put up with months of increased physical and mental pain of chemotherapy if there is a possibility that my condition may improve."
However, he can certainly appreciate present pain, and any increase due to your decisions will forever weigh on your conscience. His reaction to single dose of Revlimid must have been as terrible for you as for him.
The unconscionable doctor seems to have turned a decision not to act into the malevolent choice of "withholding chemotherapy," as if your father were demanding it. I cannot imagine you could ever feel guilt in letting nature take its course, given that your father is not requesting – is in fact unable to request – otherwise.
Take heart.
My father also died when Alzheimer's was his predominant condition. You may feel different, but in my view, your father can no longer appreciate the quality of his life in relative terms, as in "I am prepared to put up with months of increased physical and mental pain of chemotherapy if there is a possibility that my condition may improve."
However, he can certainly appreciate present pain, and any increase due to your decisions will forever weigh on your conscience. His reaction to single dose of Revlimid must have been as terrible for you as for him.
The unconscionable doctor seems to have turned a decision not to act into the malevolent choice of "withholding chemotherapy," as if your father were demanding it. I cannot imagine you could ever feel guilt in letting nature take its course, given that your father is not requesting – is in fact unable to request – otherwise.
Take heart.
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K-in-Montreal
Re: Hospice or treatment for my 84-year-old father?
My husband was diagnosed at age 79 and went through induction and stem cell transplant. Other than the myeloma, he was a very healthy person. The chemo nearly killed him not just once, but 4 times. He had a perforated bowel, 2 DVT's, and a pulmonary embolism. The chemo also caused severe neuropathy and chemo brain, both of which has greatly affected his quality of life. He is 3 years post transplant and is doing better, although the neuropathy remains. Chemo just is difficult on older people, no way around it.
Just do what is in your heart for your father and it will be the right decision. May God be with you as you go through this difficult time.
I cannot believe his doctor is harassing you over your decision and perhaps reporting her to the hospital board will stop it.
Sue in HSV.
Just do what is in your heart for your father and it will be the right decision. May God be with you as you go through this difficult time.
I cannot believe his doctor is harassing you over your decision and perhaps reporting her to the hospital board will stop it.
Sue in HSV.
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suearl - Name: Earl
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 79
Re: Hospice or treatment for my 84-year-old father?
Yes, what suearl wrote is true. For some people, myeloma therapy can cause a lot of side effects. But let's be clear. Myeloma that is left untreated will unquestionably, and very quickly, lead to the biggest "side effect" of all – death. There's also no way to know if a milder myeloma therapy, such as Revlimid by itself, or Revlimid with low-dose dex, will effectively treat Rene's father's myeloma without at least giving it a try.
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Jonah
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