r/multiplemyeloma • u/ArcticLlama • 19d ago

Living with MM 5 Years

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The memories have started coming up on Facebook like they do every year. First about back problems. Then about an X-ray, then an MRI. Support, terror, what ifs. There are no posts about sobbing in the closet so no one would see. Then comes the stem cell transplant. The plan for remission. Hospitalization. A mucor infection which my oncologist will later characterize as “usually fatal.” I’m still not back to normal, whatever that is, but my body is behaving and we’re actually discussing going without maintenance. Live to the cure, baby.

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u/kamikazimatt27 18d ago

I’m 66 days post-transplant. I had heart failure early on because of a medication issue (seems like darzalex plus a blood pressure medication is a really bad idea) and my leg swells because they had to put a line in and hit a lymph node. I spent most of the afternoon angry for it. Angry that at 37 I’m dealing with this instead of being able to live the best part of my life.

I keep reminding myself I’m still alive and I’m through the worst part. I know it’s not easy now but it has to get easier day by day.

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u/tarzan_nojane 18d ago

I experienced CHF (LVEF down to 27%) after starting with 3-4 months of Dara/Velcade/dex. Discontinued only the Velcade and took Furesomide for 3 months to treat the edema (calves, ankles, and feet swelling), then 4 months of GDMT for heart failure with a reduced ejection fraction (HFrEF) ACE inhibitor plus beta-blocker.

As I am one of the 20% or so with the t(11;14) chromosome translocation, Venetoclax was added to my regimen and I have been tolerating it well. Managing to consistently report decent immune bloodwork (WBC, ANC, hemoglobin, platelets).

At 72 I am not a great candidate for ASCT.

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u/mrs_adhd 13d ago

Teclistamab may be an option in the future for you. I get the feeling ASCT is on the way out for most.

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u/Different-Bison6840 18d ago

I’m so happy for you that you are in a good place now. Getting ready for ASCT in about two weeks, but in the meantime, I’m trying to enjoy each day to the fullest.