I posted earlier asking for patient experiences with ceasing Revlimid and the length of time before noticeable relief from side effects. I received many helpful replies. Thank you. However, I believe that post was mistakenly deleted. After consulting with my doctors at Moffitt, Sylvester (University of Miami), my local oncologist, as well as an Email with Dr. Derman in Chicago (he has some very recently published research on length of maintenance). I have decided to take a break. Though all of these doctors seemed to think most side effects from Revlimid would resolve within 4 weeks (though acknowledging the effects on blood count would take longer to resolve). I feel based on anecdotal responses it could take 4 to 6 months or longer. I have a clear PET scan from October and I plan on having MRD testing as well in the next month or so. Based on those reports I will make a decision on how to proceed. Here are a couple of links related.... https://ashpublications.org/blood/article/142/18/1518/497188/Lenalidomide-and-dexamethasone-maintenance-with-or https://ashpublications.org/blood/article/132/23/2456/40023/Minimal-residual-disease-negativity-using-deep

My father was diagnosed with Multiple Myeloma (MM) in 2003 and was in remission until 2019. Since his relapse, he has been undergoing continuous treatment. Initially, in 2019, he was administered Velcade (2mg) and Dexamethasone (20mg) every fortnight. He then transitioned to Darzalex (1200mg) alongside Dexamethasone (16mg) for 25 cycles from February 2021 to May 2022. Since May 2022, his treatment plan includes Velcade (2mg) every two weeks along with weekly Dexamethasone (12mg). Despite these treatments, I am becoming increasingly worried about the progression of his disease. His Serum Free Kappa/Lambda ratio has been on a steady rise, currently at 2.65. This indicates a probable increase in monoclonal protein, further evidenced by a persistent faint M band in the gamma region. Additionally, his S. Free Kappa Light chains are at 28.43 mg/l, while his S. Free Lambda Light chains are at 10.7 mg/l. While I understand that treatment decisions are personalized and can be complicated, I can't help but feel that his current treatment may not be adequately managing his progressing disease. My primary focus is to ensure that he receives the most effective and optimal treatment possible. Considering the increasing Kappa/Lambda ratio, rising light chain levels, and the continuous presence of the M band, I would highly value your input on his current treatment plan's appropriateness. Are there other treatment options or modifications that we should consider? I am reaching out to you for your expert advice to ensure I am advocating for the best possible care for my father.

Kyprolis (Carfilzomib) Pom Dex - with Reduced Ejection Fraction Hi everyone, Is anyone on Kyprolis (Carfilzomib) with reduced ejection fraction (LVEF <50%) at baseline? Are you >70 yrs? What Kyprolis dose were you given/able to tolerate? Did you experience Cardiac side effects or toxicity? If so what? Were you able to continue with Kyprolis if you did? Did you need a dose reduction or did you have to stop therapy? Did the cardiac effects reverse or did you experience more long lasting impacts on your cardiac health? Were there other side effects of concern that you experienced? We're in a slow biochemical relapse and this is looking potentially like our next line of treatment and although our Myeloma Specialists do not think and LVEF or 45% is contraindicative for Kyprolis and this is looking like a possibility for our next line of treatment. I am concerned and would love to hear from other patients HAPPY NEW YEAR EVERYONE!

Hello. My husband is newly diagnosed (June 2023.) He is now on Revlimid with an insanely high co-pay! We have been able to get the co-pay assist card for the last two months that he’s been on it. But now starting in January, he has to reapply. They only give 15,000 for the year which will cover about two months. We applied again, waiting on insurance approval, but running into a lot loopholes again. I guess things are more complicated with that assistant program if you are in California. After the two months we will have to look into other options. Does anyone else have suggestions on where to get help if you live in California? He has private insurance. We are new to all of this and a bit overwhelmed trying to keep up with it all!