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A MyMyelomaTeam Member asked a question 💭
Santa Ana, CA

I’m writing Pro’s and Con’s for treatment. My mother had stage 4 ovarian cancer 3 times. Chemo, cured, reoccurrence, chemo & surgery, reoccurrence. In the end she read her Chemo diary and decided against any further treatment. She did have quality of life in the end.

April 14, 2023
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Answer Summary

Members overwhelmingly shared that they would choose treatment again for multiple myeloma, citing that while stem cell transplants and... Read more

Members overwhelmingly shared that they would choose treatment again for multiple myeloma, citing that while stem cell transplants and chemotherapy regimens like Revlimid, Velcade, and Darzalex come with difficult side effects including neuropathy, fatigue, and cardiac issues, the treatments have given them years of meaningful life with family, grandchildren, and relatively good quality of life. Several members emphasized the importance of researching medications beforehand and advocating for oneself after experiencing serious complications like heart damage and pacemaker implants from certain drugs, with many noting they would avoid specific medications like Velcade or Revlimid in hindsight while enthusiastically endorsing others like Darzalex. A recurring theme was that the decision to pursue aggressive treatment versus prioritizing quality of life is deeply personal and depends on individual circumstances including age, comorbidities, treatment response, and personal values, with members offering profound respect for those who choose comfort over continued intervention while expressing their own determination to fight as long as they can participate in life's joys.

A MyMyelomaTeam Member

I was diagnosed in 2010 and have had 2 transplants, one in 2011 and the other in 2017. The only way I would choose to die is if I was bedridden, had to be hand fed, had to have a sponge bath, someone has to wipe my butt and I was in pain. As long as I can get out and do something, I would do whatever it takes to stay alive.

April 16, 2023 (edited)
A MyMyelomaTeam Member

Mine started 15 years ago. They said I had 2-5 years. Ha, what did they know! The docs that ignored my back pain (which turned out to be 7 compression fractures) also ignored my blood work which showed I was heading for type 2 diabetes. So I have some complicating factors also, not to mention my age! But giving up isn't an option for me until I think there is no hope. I believe we all have a job to do on earth and if you haven't finished it yet, you shouldn't just decide to give it all up. I know someone who had the same issues as your mother and made the same choices. It is between those women and God. But I for one think you hang on until you feel strongly it is time to let go. I have gone through some really awful times here and there, but then I come out of the valley and end up on a mountain top for awhile. And it is worth fighting the disease for the mountain top experiences and the time with my family.Don't ever give up hope.

April 17, 2023
A MyMyelomaTeam Member

I did induction therapy from June-September, 2020. I had a Stem Cell Transplant September 29, 2020. Because I have Minimal Residual Disease ( MRD ) I will be in treatment ( Revlimid and Velcade) for the rest of my life. I am 73 and the fatigue and diarrhea I experience because of MM and the medications my lifestyle has definitely changed. BUT, I wouldn’t change anything, and if my MM came back I would do the Stem Cell Transplant again. I am still able to enjoy being with family and friends, I walk the dog, help my wife in the garden as the fatigue allows and golf, and still enjoy life.

June 27, 2023
A MyMyelomaTeam Member

I would definitely take the treatments over again and will continue with my monthly chemo until I die because the treatments have given me 21yrs. of extra life. It hasn’t all been easy but still worth it. I will refuse too give up too the very end and lots of MM suffers die of something else.

April 14, 2023
A MyMyelomaTeam Member

I would for sure go with treatment as long as I am able to care for myself and make my own decisions. I prefer immunotherapy treatments like Darzalex. I don't care for the side effects of the immunomodulators like Revlimid and Pomalyst, but I wouldn't be here without them. I don't want anymore alklating agents like Melphalan and Cytoxan if I can help it💕

April 23, 2023

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A MyMyelomaTeam Member asked a question 💭
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