My mother in law was diagnosed with Stage III multiple myeloma and end stage renal failure 10 months ago. We have tried all four of the newest drugs and combos with no response. Still 85-90% tumor burden. She also has had some type of allergic reaction to every drug, forcing us to quit after 1, 2, or 3 rounds. She has severe back pain, high blood pressure and takes medication and does peritoneal dialysis daily.
Her oncologist is suggesting the new drug approved in November as a reasonable try, but he would want to hospitalize her as a precaution because of her history of reaction.
She is only 57, but her quality of life is very important to her and me. I feel as if we have come to the end of the road and that we would be better to allow her to enjoy what time she has. Our oncologist just won't address the topic. I am super frustrated.
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Re: Quantity of life vs. quality of life
Hi Kstone,
Sorry to hear about this very tough situation with your mother-in-law.
"Newest" is a bit of a vague term, as some people may consider a drug such as Velcade or Revlimid to be "new" (although they have been around awhile). What exactly were the four drug cocktails that your mother-in-law tried earlier, and which drug cocktail is now being considered?
I can see your frustration about the onc not being willing to discuss end-of-life issues with you, but I think it would first be helpful to understand if there is truly any solid hope here or not (especially given her young age). Also, is the oncologist who your mother-in-law is working with a multiple myeloma specialist that exclusively works with multiple myeloma (not simply a hematologist / oncologist who may have some multiple myeloma patients in his / her practice)?
Sorry to hear about this very tough situation with your mother-in-law.
"Newest" is a bit of a vague term, as some people may consider a drug such as Velcade or Revlimid to be "new" (although they have been around awhile). What exactly were the four drug cocktails that your mother-in-law tried earlier, and which drug cocktail is now being considered?
I can see your frustration about the onc not being willing to discuss end-of-life issues with you, but I think it would first be helpful to understand if there is truly any solid hope here or not (especially given her young age). Also, is the oncologist who your mother-in-law is working with a multiple myeloma specialist that exclusively works with multiple myeloma (not simply a hematologist / oncologist who may have some multiple myeloma patients in his / her practice)?
Last edited by Multibilly on Sun Jan 17, 2016 9:14 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Quantity of life vs. quality of life
At only 57, I would try more treatment options. And being hospitalized to get the best outcome for her sounds like a very good idea. Is her dialysis a result of her myeloma? My understanding is that good treatment outcomes can help improve kidney function. I understand about quality vs quantity, but she seems quite young to be giving up on a treatable cancer. Is she being treated by a multiple myeloma specialist?
Re: Quantity of life vs. quality of life
Kstone,
You said, "I feel as if we have come to the end of the road and that we would be better to allow her to enjoy what time she has."
Does your mother-in-law have dementia? I am a little confused as to why the decision to continue or discontinue treatment is yours.
You said, "I feel as if we have come to the end of the road and that we would be better to allow her to enjoy what time she has."
Does your mother-in-law have dementia? I am a little confused as to why the decision to continue or discontinue treatment is yours.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Quantity of life vs. quality of life
Hi Kstone,
I think you have been given really good advice by the previous people posting. It is sad that your MIL has to be on dialysis and also has not yet responded well to any treatments. However, there won't be a QOL of any sort if she cannot respond to anything. Thus, I concur that you should be getting her to a myeloma specialist, if you have not already done so. Are there others in your family who can share with the caregiver role? This is not an easy situation, and good luck to her and your family. It's not great to have any sort of cancer, but at least multiple myeloma is treatable, and thus there is hope for each patient, even at a Stage 3 diagnosis.
I think you have been given really good advice by the previous people posting. It is sad that your MIL has to be on dialysis and also has not yet responded well to any treatments. However, there won't be a QOL of any sort if she cannot respond to anything. Thus, I concur that you should be getting her to a myeloma specialist, if you have not already done so. Are there others in your family who can share with the caregiver role? This is not an easy situation, and good luck to her and your family. It's not great to have any sort of cancer, but at least multiple myeloma is treatable, and thus there is hope for each patient, even at a Stage 3 diagnosis.
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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: Quantity of life vs. quality of life
Hello KStone:
I am very sorry to hear about the difficult situation. I second the sentiments of the other posters.
Couple of thoughts to you. Since the adverse reactions to the drugs are the main problems (I gather), be advised that the monoclonal antibodies, elotuzumab (Empliciti) and daratumumab (Darzalex), which should be available to your MIL, are reported to have "infusion- related reactions", which is less than the other agents. The trouble with elotuzumab is that it needs to be given with Revlimid. If she gets through the first one or two, they are reported to go down, afterwards. The reactions are more like the type of reactions you would get from an inoculation. Also, the next generation proteasome inhibitor, Kyprolis, is reported by many (not all) to be better tolerated than Velcade, and Pomalyst better than Revlimid.
Lastly, if you have not done so already, a more experienced multiple myeloma specialist has probably seen all this before (and I have no idea about your present doctor). I would look into the possibility of getting a consultation with a very experienced multiple myeloma specialist. As you mentioned, not responding to the best treatments is not good, however, many people ultimately get a good response (in your case if you can find the right combo that your MIL can tolerate), even though they started with a very high burden of multiple myeloma.
Good luck.
I am very sorry to hear about the difficult situation. I second the sentiments of the other posters.
Couple of thoughts to you. Since the adverse reactions to the drugs are the main problems (I gather), be advised that the monoclonal antibodies, elotuzumab (Empliciti) and daratumumab (Darzalex), which should be available to your MIL, are reported to have "infusion- related reactions", which is less than the other agents. The trouble with elotuzumab is that it needs to be given with Revlimid. If she gets through the first one or two, they are reported to go down, afterwards. The reactions are more like the type of reactions you would get from an inoculation. Also, the next generation proteasome inhibitor, Kyprolis, is reported by many (not all) to be better tolerated than Velcade, and Pomalyst better than Revlimid.
Lastly, if you have not done so already, a more experienced multiple myeloma specialist has probably seen all this before (and I have no idea about your present doctor). I would look into the possibility of getting a consultation with a very experienced multiple myeloma specialist. As you mentioned, not responding to the best treatments is not good, however, many people ultimately get a good response (in your case if you can find the right combo that your MIL can tolerate), even though they started with a very high burden of multiple myeloma.
Good luck.
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JPC - Name: JPC
6 posts
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