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Does Anyone Take Dexamethasone And Revlimid As Maintence?
A MyMyelomaTeam Member asked a question 💭

I’m really struggling with taking 20 mg of Dexamethasone weekly. It’s 50 degrees here and I’m sweating like I’m in the Caribbean…. Can anyone explain why we need to take all the dex in one day? I wish we could take 1 a day for 5 days…. Thanks in advance for any suggestions…. I have no idea if this will be my maintenance therapy for the rest of my life but it’s not a great maintenance plan for me…

posted November 26, 2022
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A MyMyelomaTeam Member

I hope it works for I mentioned the combo of Dex, Revlimid and Velcade have kept me stable. I have some side effects from Revlimid, but nothing I can't manage.. the med alters my taste, and am tired sometimes from the entire combo.....but if it keeps the MM under control, it's worth it. Blessings to all!!

posted December 6, 2022
A MyMyelomaTeam Member

Get a clonoSEQ test - preferably from a Bone Marrow Biopsy. If you’re Negative at 10 -6 (no cancer per million cells), lookup the MRD-SURE Report (web search) and discuss with your Doc about being on Monitoring without any MM Meds. My Story @A MyMyelomaTeam Member has a link to a video by Dr Costa where he explains the benefits of being off All MM Meds if you’re 10 -6 Negative. Secondary cancers is one of many reasons to be get off All MM Meds, if you qualify. Avoiding Jaw bone death (has happened to many on this forum) is another. There’s also references at my Story as to the benefits of C3 Curcumin. See the link to the New NIH Study released this year about C3 Curcumin.

In many cases, the practices of the “standard of care” are keeping people on MM Meds far too long. New Case Studies released just this year are proving Less is Best, if you’re in Complete Remission at 10 -6. This year, there are posts of More and More People that are Transitioning to just Monitoring at their Doctor’s suggestion.

posted December 11, 2022
A MyMyelomaTeam Member

My hubby n 25. The doc went down to 12. Crabby. Night sweats. Not sleeping. Eating too much. 12 is ok for him.

posted December 4, 2022
A MyMyelomaTeam Member

You're All Amazing Individuals that help others in so many ways 🙏👍

posted December 3, 2022
A MyMyelomaTeam Member

Hi…I’m about 2 1/2 years since diagnosis. I started with 25 mg of Remlivid with Dex and Valcade. The Valcade gave me neuropathy particularly in the toes. Stopped Valcade about 6 months ago and unfortunately still have neuropathy. I don’t recall the dosage of the Dex but it was not fun. After a stem cycle transplant in February 2022, I am on maintenance Remlivid only…No Dex. My maintenance dosage started at 10 mg and I recently change to 5 mg. Meeting with oncologist on Wednesday for blood work, etc. and to see how the 5 mg dosage is working. Hope this helps.
Take care !

posted November 26, 2022

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