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And MRI and reach again MRD negative ,,,,doctor discontinued the kyprolis I ask her to reduce revlimid from 10mg to 5mg she refused , I am high risk is this the reason why she kept me in 10mg ????
That makes sense and there’s studies that prove it out. For normal risk MM patients:
ChatGPT:
When staying in maintenance- Progression-Free Survival (PFS): Continuous Revlimid maintenance slightly prolongs overall median PFS across broad trial populations compared to stopping at a fixed time. In randomized trials (like ENDURANCE), continuous maintenance extended median PFS by roughly 3.5 to 4 months overall compared to stopping at 2 years (e.g., Remission length ~42.5 months vs. ~38.9 months).
However, overall Survival (OS): Crucially, major long-term trials show no significant difference in Overall Survival between stopping after a fixed duration and continuing indefinitely.
Genetic Risk Profile: Patients with standard-risk cytogenetics fair best when stopping treatment. High-risk cytogenetic features (e.g., deletion 17p, t(4;14)) often warrant continuous maintenance because their risk of rapid relapse is higher.
If I was high risk, which I’m not, I would likely stay on maintenance indefinitely but at the lowest concentration dose available. Balancing quality of life vs maintaining remission is equally important to me.Hope this helps!
I think it depends on how hard you asked…lol. I can be quite stubborn and insisted we reduce medications as my quality of life (that’s how I framed the discussion) was as important to keeping the disease under control. I couldn’t go through life being short of breath, fatigued and feeling weak. I pushed back hard. They relented and reduced my dose of Pomalyst- (sister drug of Revlimid) while monitoring by blood work over several months. No change… so I asked to be reduced again. No change. Then I insisted on a myeloma drug-free holiday. Dana Farber agreed and I’ve been off all meds for over a year. I recently had a small bump on my m-spike at 0.2, which was unusual as my light chains and immunoglobulins remained unchanged. They said that sometimes happens as your body resets its immune system after therapy. So that’s where I’m at. The year off meds allowed my body to recover its strength quickly. We took a 14 day trip to Alaska this summer, got home, then 3 weeks later left on a 19 day private tour around Ireland. I felt great the whole time. It was my reward for feeling bad for two years. Hope this helps.
Getty,
Even MM Specialists say continuing on Revlimid can cause more cancers and not to be on it for more than 2 years. @A MyMyelomaTeam Member says to get off all treatment as soon as you are negative. He did not immediately and now suffers from neuropathy. He has been treatment free for quite a long time now. He says if he ever has another problem, he will be treated for a short time, then quit, so he can keep a strong immune system. These drugs are toxic.
Paula🌹
@A MyMyelomaTeam Member
Hi Getta,
Larry2 is high risk, MRD negative and off all MM drugs. One thing you should know is he is doing many non-conventional things to maintain his MRD status.
Go to his profile to read about his MM journey. His story is very hopeful.
Vicki7 😊
Yes I did the clonoseq test twice and I was MRD negative!!!!!!
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