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MyMyelomaTeam asked a question 💭
San Francisco, CA
June 19, 2024
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Answer Summary

Members shared deeply personal experiences navigating multiple myeloma treatment, with many expressing gratitude for strong medical teams and... Read more

Members shared deeply personal experiences navigating multiple myeloma treatment, with many expressing gratitude for strong medical teams and remissions lasting from one to over seven years, while others described ongoing struggles with aggressive disease, multiple treatment failures, and the emotional toll of relapsing despite therapies like CAR-T, stem cell transplants, and various drug combinations. Several members offered practical guidance, including seeking out multiple myeloma specialists at centers like Dana-Farber, Emory, or MD Anderson, applying for financial assistance through programs like the Multiple Myeloma Research Foundation or pharmaceutical patient assistance, and advocating fiercely for oneself when navigating insurance barriers or VA healthcare challenges. A recurring theme was the central role of faith, hope, and community support in sustaining resilience through the uncertainty, with members encouraging one another to never give up, stay informed, and lean on both medical expertise and spiritual strength to keep fighting.

A MyMyelomaTeam Member

It's unfortunate I have an aggressive myeloma and have tried 9 different combinations of treatment over the past 8 years.
I underwent CAR T Cell therapy March 2023 and achieved remission up until now. I will be looking at a bispecific treatment soon. I just keep fighting back, in Jesus' name, until it's time to go.
If it weren't for my hope in God, I think I would've died from the sadness and struggle a long time ago.

June 19, 2024
A MyMyelomaTeam Member

IMF has a great book that explains your blood lab results. And with myeloma you really need to understand your blood lab results and follow them carefully. The blood lab results is like a map as to where in the heck you are on this crazy journey. Or I suppose you could forgo everything and just live one day to the next enjoying the trip. Suppose the results might be about the same.

June 19, 2024
A MyMyelomaTeam Member

So far I have been blessed with a great MM Specialist team at Emory and my local oncologist who have provided excellent guidance in changing my meds when necessary. I was diagnosed almost seven years ago and have experienced all the peaks and valleys of living with MM but I continue to enjoy my life.

June 19, 2024
A MyMyelomaTeam Member

Truer words were never posted my friend!

July 8, 2024
A MyMyelomaTeam Member

Somewhat frustrated - imagine how many people could be helped if the mark-up of the drugs we take was fair. Thalidomide made in the 60s cost pennies per capsule, today a 21 day regimen (21 capsules) costs many thousands of dollars. Medicare or insurance pays for it so we don't seem to mind. Something is very wrong!

July 8, 2024

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