My mother is close to 70 and was diagnosed with Stage 3 multiple myeloma earlier this year. She went through radiation and a couple of rounds of chemo, and the side effects were such that she absolutely refused to do any more treatment. She is also suffering from dementia, but this decision was made when she was totally lucid. (Frankly, had she been perfectly lucid the whole time, I highly doubt she would have agreed to the treatment to begin with.)
She is now at home receiving hospice care, including 1 mg of dexamethasone twice daily. This regimen very quickly increased her energy levels and appetite, both of which were rapidly declining, so she is doing better now off of the treatment than she has been doing for well over a year (including the months prior to diagnosis, when her health was failing but we didn't know why).
I'm not looking for criticism of her decision to end treatment. That decision is made and for various reasons (including various other non-cancer diagnoses), I agree with it. But I'm curious about how long we can expect to have her with us.
Prior to stopping treatment, her oncologist told her she had a life expectancy of 3 months if she stopped treatment, but I'm not totally sure if he was under-estimating to try to convince her to continue with treatment. I'm also not sure to what extent, if any, the dex will extend her life expectancy.
Any thoughts?
Thanks in advance for any information you can provide.
Forums
Re: Life expectancy once treatment ends?
My grandmother was diagnosed with "Leukemia" about 35 years ago - now I wonder if she had multiple myeloma since I have it.
She was 69 yeas old and refused all chemo and said, "If it is my time to go, it is my time to go.". She did have some blood transfusions - but she was diagnosed in August and died the following March- that was 7 months.
She stayed in her home with her husband until she went into a coma.
She was 69 yeas old and refused all chemo and said, "If it is my time to go, it is my time to go.". She did have some blood transfusions - but she was diagnosed in August and died the following March- that was 7 months.
She stayed in her home with her husband until she went into a coma.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Life expectancy once treatment ends?
Hello,
I would say it depends completely on the philosophy of the hospice staff and your response to their treatment. Some hospice nurses are very good at "end of life" care and they make the patient very comfortable while minimizing life saving interventions, while others continue to nurse them back again and again.
My mother went home on hospice last September with stage 4 lung cancer after suffering a brain bleed, and she is still alive one year later and unfortunately now in a nursing home.
I would also think it would depend on the tumor burden of multiple myeloma which you didn't completely disclose, but if you provided more information on the involved organs, we might be able to give you more precise feedback.
I'm very sorry for your struggles. I understand completely.
Best
J
I would say it depends completely on the philosophy of the hospice staff and your response to their treatment. Some hospice nurses are very good at "end of life" care and they make the patient very comfortable while minimizing life saving interventions, while others continue to nurse them back again and again.
My mother went home on hospice last September with stage 4 lung cancer after suffering a brain bleed, and she is still alive one year later and unfortunately now in a nursing home.
I would also think it would depend on the tumor burden of multiple myeloma which you didn't completely disclose, but if you provided more information on the involved organs, we might be able to give you more precise feedback.
I'm very sorry for your struggles. I understand completely.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Life expectancy once treatment ends?
OhioGirl,
I am so sorry you are having to go through this. Your mother is very lucky to have a daughter who will walk this walk with her. I know how stressful it can be, so please take care of yourself.
I agree with jhorner about knowing and understanding the treatment philosophy of the hospice group you are working with. Dex is a treatment for multiple myeloma, and you should understand why they are giving it to her.
EJ and I went through this with his mother several years ago - she was 90, had dementia, and developed appendicitis. The week of her passing, she had a stroke, and you could tell that her body was shutting down. When EJ made the decision to let her go, and hospice was brought in, they explained to us that almost any intervention -- including fluids -- could prolong her life. We were horrified! We wanted her to be comfortable and not suffer. Hospice was fine with giving her pain medicine (and maybe something for anxiety) to keep her comfortable, but it took some discussion to convince us that she would not feel thirsty if we deprived her of fluids.
(I don't know how to say this next part, so excuse me if I offend anybody) EJs mom had several older relatives who wanted to say their goodbyes. We asked hospice if they could give her something to calm her so her relatives could visit and not get upset at her condition. They did, and it really helped to make the whole situation a bit better. Once they said their goodbyes, hospice stopped all treatment. EJ and I had a very tough week watching over her, but in the end she passed peacefully. The last time I saw her she was reaching for something that wasn't there -- I believe she was seeing angels!
My thoughts are with you and your family,
Lyn
I am so sorry you are having to go through this. Your mother is very lucky to have a daughter who will walk this walk with her. I know how stressful it can be, so please take care of yourself.
I agree with jhorner about knowing and understanding the treatment philosophy of the hospice group you are working with. Dex is a treatment for multiple myeloma, and you should understand why they are giving it to her.
EJ and I went through this with his mother several years ago - she was 90, had dementia, and developed appendicitis. The week of her passing, she had a stroke, and you could tell that her body was shutting down. When EJ made the decision to let her go, and hospice was brought in, they explained to us that almost any intervention -- including fluids -- could prolong her life. We were horrified! We wanted her to be comfortable and not suffer. Hospice was fine with giving her pain medicine (and maybe something for anxiety) to keep her comfortable, but it took some discussion to convince us that she would not feel thirsty if we deprived her of fluids.
(I don't know how to say this next part, so excuse me if I offend anybody) EJs mom had several older relatives who wanted to say their goodbyes. We asked hospice if they could give her something to calm her so her relatives could visit and not get upset at her condition. They did, and it really helped to make the whole situation a bit better. Once they said their goodbyes, hospice stopped all treatment. EJ and I had a very tough week watching over her, but in the end she passed peacefully. The last time I saw her she was reaching for something that wasn't there -- I believe she was seeing angels!
My thoughts are with you and your family,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Life expectancy once treatment ends?
I couldn't possibly guess how long you might have your mom with you. But as far as hospice goes, generally speaking they don't necessarily stop all treatments. But they will generally look at the patients meds to see how many might be able to be eliminated.
For example, vitamins are pretty much unnecessary at this point. but there should be meds on board to handle pain and anxiety. A good hospice nurse is always a godsend.
I wish you all the best going forward. And you are a remarkable daughter for honoring her wishes regarding treatment.
For example, vitamins are pretty much unnecessary at this point. but there should be meds on board to handle pain and anxiety. A good hospice nurse is always a godsend.
I wish you all the best going forward. And you are a remarkable daughter for honoring her wishes regarding treatment.
Re: Life expectancy once treatment ends?
Hi Ohio Girl,
Sorry to hear about your mother. My mother passed away from multiple myeloma on August 3. She had stage III and had lesions on all her bones. She did some treatments, but it made her too weak. She decided to stop the chemo to get stronger. Even though she got stronger, she never got well enough to continue the treatments.
The oncologist talked to us about "quality of life" . My mother never got to go home, she was in a rehab. The oncologist told us that the multiple myeloma was secondary and it would be other things that would finally kill her. He was right. Mom died from pneumonia, respiratory failure and kidney failure all due from the cancer.
I wish you the best. I know how hard it is. My thoughts are with you.
Oh I forget to mention, mom was 79 and lived about 3 months after the diagnosis.
Sorry to hear about your mother. My mother passed away from multiple myeloma on August 3. She had stage III and had lesions on all her bones. She did some treatments, but it made her too weak. She decided to stop the chemo to get stronger. Even though she got stronger, she never got well enough to continue the treatments.
The oncologist talked to us about "quality of life" . My mother never got to go home, she was in a rehab. The oncologist told us that the multiple myeloma was secondary and it would be other things that would finally kill her. He was right. Mom died from pneumonia, respiratory failure and kidney failure all due from the cancer.
I wish you the best. I know how hard it is. My thoughts are with you.
Oh I forget to mention, mom was 79 and lived about 3 months after the diagnosis.
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sandy57 - Name: sandy57
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 78
Re: Life expectancy once treatment ends?
Thank you so much everyone for your responses.
A little more background. My mother was officially diagnosed in mid-July, but we suspected the diagnosis for about 3 months prior to that. She was unable to have a bone marrow biopsy to confirm it due to some other medical issues, so that's what delayed the diagnosis (she did eventually have the biopsy). Her xrays showed that her entire body is "riddled with myeloma" (that can't be a term of art, but it is what both the oncologist and her PCP said). Her bones are in bad shape and she was in quite a bit of pain. The radiation targeted the worst areas (hips and lower back) and it seems to have helped with the pain.
Her sodium levels were dangerously low prior to treatment, so I anticipate that that problem will likely return somewhat quickly. Her potassium has also been inexplicably low (around 2.5 at one point), which may or may not be linked to the myeloma. Her kidneys do not seem to be affected at this point. Her calcium was quite high, sufficient to warrant a stage 3 diagnosis on its own, though with 1.5 rounds of Velcade and 10 days of radiation, that went back to normal.
Having now stopped treatment, who knows how long it will take for that to go back up, but the oncologist who warned us she had 3 months suggested it would be the high calcium that would take her life in the end.
The hospice nurse was very clear that the dex was to treat the bone pain, not to treat the myeloma. From the research I've done, it seems as though therapeutic doses of dex are MUCH higher (in the 20-40 mg range), whereas she is taking only 2 mg daily. I have no idea if this would in any way treat the myeloma at that dose, or if it will truly only help with the pain.
Other than putting her on the dex, they took her off most of her other meds, including meds for high cholesterol, high blood pressure, an antiviral med, and all vitamins / supplements. She is only taking the dex, 2 meds for a neurogenic bladder, and pain meds (which is currently limited to Tylenol at her choice, if you can believe it).
As for the hospice philosophy, my understanding of hospice, and the feeling I got from this agency, was that they do not hasten or delay death. They let it happen and make the patient as comfortable as possible. We did sign a DNR-CC, FWIW.
Thank you again for your messages. I appreciate your support.
A little more background. My mother was officially diagnosed in mid-July, but we suspected the diagnosis for about 3 months prior to that. She was unable to have a bone marrow biopsy to confirm it due to some other medical issues, so that's what delayed the diagnosis (she did eventually have the biopsy). Her xrays showed that her entire body is "riddled with myeloma" (that can't be a term of art, but it is what both the oncologist and her PCP said). Her bones are in bad shape and she was in quite a bit of pain. The radiation targeted the worst areas (hips and lower back) and it seems to have helped with the pain.
Her sodium levels were dangerously low prior to treatment, so I anticipate that that problem will likely return somewhat quickly. Her potassium has also been inexplicably low (around 2.5 at one point), which may or may not be linked to the myeloma. Her kidneys do not seem to be affected at this point. Her calcium was quite high, sufficient to warrant a stage 3 diagnosis on its own, though with 1.5 rounds of Velcade and 10 days of radiation, that went back to normal.
Having now stopped treatment, who knows how long it will take for that to go back up, but the oncologist who warned us she had 3 months suggested it would be the high calcium that would take her life in the end.
The hospice nurse was very clear that the dex was to treat the bone pain, not to treat the myeloma. From the research I've done, it seems as though therapeutic doses of dex are MUCH higher (in the 20-40 mg range), whereas she is taking only 2 mg daily. I have no idea if this would in any way treat the myeloma at that dose, or if it will truly only help with the pain.
Other than putting her on the dex, they took her off most of her other meds, including meds for high cholesterol, high blood pressure, an antiviral med, and all vitamins / supplements. She is only taking the dex, 2 meds for a neurogenic bladder, and pain meds (which is currently limited to Tylenol at her choice, if you can believe it).
As for the hospice philosophy, my understanding of hospice, and the feeling I got from this agency, was that they do not hasten or delay death. They let it happen and make the patient as comfortable as possible. We did sign a DNR-CC, FWIW.
Thank you again for your messages. I appreciate your support.
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OhioGirl
Re: Life expectancy once treatment ends?
I'm sure this is very hard for you. I had a couple comments concerning your moms meds tho. To clarify, my husband has myeloma and heart disease, and I also am an aide in a nursing home that uses hospice quite frequently.
I really question taking her off her anti-viral. It's not life saving. But from the standpoint of myeloma, she has a higher risk of shingles. That is not something I would want to see anyone have, but especially in their end stages of life.
And the second would be that, while your mom may feel she only wants Tylenol right now, things can change very quickly, and having stronger pain meds on hand for when that change comes would be a very good thing.
I don't think it would hurt to educate the hospice nurse regarding the higher risk of shingles in myeloma patients. Any viral infection could speed the end up, of course, but shingles is just a horrible thing for anyone to deal with.
I wish you strength and peace for the remainder of this journey with you mom.
I really question taking her off her anti-viral. It's not life saving. But from the standpoint of myeloma, she has a higher risk of shingles. That is not something I would want to see anyone have, but especially in their end stages of life.
And the second would be that, while your mom may feel she only wants Tylenol right now, things can change very quickly, and having stronger pain meds on hand for when that change comes would be a very good thing.
I don't think it would hurt to educate the hospice nurse regarding the higher risk of shingles in myeloma patients. Any viral infection could speed the end up, of course, but shingles is just a horrible thing for anyone to deal with.
I wish you strength and peace for the remainder of this journey with you mom.
Re: Life expectancy once treatment ends?
OhioGirl-
Hospice is excellent at knowing when a change is taking place and advising you of it. They also will adjust your mother's medications for pain as she needs more. I had hospice care for my husband as he was dying of lung cancer. He never complained of pain until the last few days of his life, and then I could tell that he was in a lot of bone pain. I called the hospice agency to report it and within an hour a pharmacy had delivered liquid morphine for me to give him. Their response times to all of my requests were absolutely amazing.
Dexamethasone is an anti-inflammatory and, in that regard, it helps with pain levels. The cancer and the bone lesions cause inflammation and pain that the dex can address. I know that on the day after I take my weekly dex I have no pain. So, the Tylenol may be adequate pain relief in addition to the twice daily dex that your mother is receiving.
Just pay attention to how she responds when she moves or when she is touched to judge whether the pain relief is adequate.
I send both of you lots of love while your mother moves through her final journey. She will decide on how long she has and with your support and that of hospice will likely pass peacefully.
Nancy in Phila
Hospice is excellent at knowing when a change is taking place and advising you of it. They also will adjust your mother's medications for pain as she needs more. I had hospice care for my husband as he was dying of lung cancer. He never complained of pain until the last few days of his life, and then I could tell that he was in a lot of bone pain. I called the hospice agency to report it and within an hour a pharmacy had delivered liquid morphine for me to give him. Their response times to all of my requests were absolutely amazing.
Dexamethasone is an anti-inflammatory and, in that regard, it helps with pain levels. The cancer and the bone lesions cause inflammation and pain that the dex can address. I know that on the day after I take my weekly dex I have no pain. So, the Tylenol may be adequate pain relief in addition to the twice daily dex that your mother is receiving.
Just pay attention to how she responds when she moves or when she is touched to judge whether the pain relief is adequate.
I send both of you lots of love while your mother moves through her final journey. She will decide on how long she has and with your support and that of hospice will likely pass peacefully.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Life expectancy once treatment ends?
sandy57 wrote:
My mother is going thru this now, she was diagnosed in early August, is having dialysis, the myeloma treatments have been stopped, she has already had pneumonia, UTI and extreme confusion, delusions and hallucinations, we have gotten her placed in a rehab and have just went from 'years to fight and survive to months, at most.
She is 73.
Thank you for sharing this post, I have been reading as much as I can to prepare for this, it is all just so much sooner than we thought....
Sorry to hear about your mother. My mother passed away from multiple myeloma on August 3. She had stage III and had lesions on all her bones. She did some treatments, but it made her too weak. She decided to stop the chemo to get stronger. Even though she got stronger, she never got well enough to continue the treatments.
The oncologist talked to us about "quality of life" . My mother never got to go home, she was in a rehab. The oncologist told us that the multiple myeloma was secondary and it would be other things that would finally kill her. He was right. Mom died from pneumonia, respiratory failure and kidney failure all due from the cancer ...
Oh I forget to mention, mom was 79 and lived about 3 months after the diagnosis."
My mother is going thru this now, she was diagnosed in early August, is having dialysis, the myeloma treatments have been stopped, she has already had pneumonia, UTI and extreme confusion, delusions and hallucinations, we have gotten her placed in a rehab and have just went from 'years to fight and survive to months, at most.
She is 73.
Thank you for sharing this post, I have been reading as much as I can to prepare for this, it is all just so much sooner than we thought....
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MaddzMom
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