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Multiple Myeloma: Not a candidate for chemo, what's next?

Posted by irishgeraldine @irishgeraldine, Mar 18, 2020

My 66 year old sister was diagnosed with Multiple Myaloma in January 2020. She is now in hospice. Doctors say her blood levels do not make her candidate for chemo. Help!! how can this be where an otherwise healthy female goes from diagnosis to hospice in such a short time. Any suggestions of treatments that might help her survive longer?.

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kandc317 | @kandc317 | Mar 19, 2020

So very sorry about your sister's condition. My wife was diagnosed with MM in late 2019. Her situation to me, a novice looked grim since in hindsight we remembered 5 years earlier that she had asymptomatic leg fractures. We thought nothing of it at the time so we missed out on treating her years sooner. We found a comprehensive cancer center (the only one in our state) and began treatment with one of several MM specialists. Did your sister see one or more MM specialists who participated in her diagnosis? I've also been told that a second opinion is also imperative since MM is so complex. What was their assessment based on if you don't mind me asking? Take care and share anything more you care to but maybe another opinion will help. The word hospice is very scary at first. They mentioned it to my wife and I as a choice and explained it wasn't always an end of life choice, so there may be more hope, but without one or more expert opinions I wouldn't stop asking questions. Thinking of you and your sister. Sincerely!

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kandc317 | @kandc317 | Mar 19, 2020
In reply to @kandc317 "So very sorry about your sister's condition. My wife was diagnosed with MM in late 2019...." + (show)
@kandc317

So very sorry about your sister's condition. My wife was diagnosed with MM in late 2019. Her situation to me, a novice looked grim since in hindsight we remembered 5 years earlier that she had asymptomatic leg fractures. We thought nothing of it at the time so we missed out on treating her years sooner. We found a comprehensive cancer center (the only one in our state) and began treatment with one of several MM specialists. Did your sister see one or more MM specialists who participated in her diagnosis? I've also been told that a second opinion is also imperative since MM is so complex. What was their assessment based on if you don't mind me asking? Take care and share anything more you care to but maybe another opinion will help. The word hospice is very scary at first. They mentioned it to my wife and I as a choice and explained it wasn't always an end of life choice, so there may be more hope, but without one or more expert opinions I wouldn't stop asking questions. Thinking of you and your sister. Sincerely!

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@irishgeraldine another thing. My wifes first prognosis was stage 3 at diagnosis (the final terminal stage of MM). It was so worrisome for me since I thought she might have no chance of improving. Well I've since found out it is possible to improve your prognosis. It's not always a one way street. I believe she's now stage 2 due to treatment. I'm still fearful though of what's happened to her body thus far that wasn't caught earlier. Please keep in mind that I have few other reference points with this disease and am still learning about it. My initial thoughts are treating it has been challenging but with the right medical team a lot of the unknowns can be answered which has been very helpful for our outlook.

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friedamay | @friedamay | Mar 19, 2020

Most important thing is to see a multiple myeloma specialist.

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