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Hi Hdrew. You might be in an early biochemical relapse. It sounds like your doctors have a handle on it. I'm hoping the dosage increase gets your numbers right back down. Hugs, Donna
Paula,
With long term use of Maintenance, People become resistant to a Med and when they finally do relapse, that Med does nothing for them. They don’t realize this right away because they may not Relapse for a long time.
The Onc who did the Masters Trial (Dr Costa) did a Video a few years back and very specifically said that when a person becomes MRD Negative they’re much better to Stop Maintenance so that they have that Med, in Reserve in Case they need it in the Future.
Unfortunately, for some there’s just too much money in all of this that they want to keep people on Meds. When an Onc says “My way or Out of Here”, it’s likely to be a financial motive. I know of some that have been told these words.
Back in 2021, I left my first Onc before I even Started Treatment. Best thing that ever happened to me.
@A MyMyelomaTeam Member,
I see many people say that after just a short time they are MRD, but they continue with the treatment. You may be an anomaly, but I’m hopeful that your story will help doctors understand MM a little more and patients will too, so they will advocate for themselves like you did. I was diagnosed in 2020 but I think I had MGUS before 2011, since my WBC was below normal. What’s amazed me is that I have not progressed as fast as all the Medical Journals said I would. I’m grateful to God for that.
Paula🌹
I’ll have to ask about that clonoSEQ MRD test. My Kappa/Lamda ratio is high at 2.2. I’m currently on Ninlaro 3mg for maintenance but moving to 4mg. I was in remission 3.5 years post SCT. The plan is to monitor M Spike monthly and consider treatment change when it reaches 0.5. Thank you for your reply!
@A MyMyelomaTeam Member,
What would we do without you!💕 Thank you for using your talent to research MM. We are all profiting from your work.
Paula🌹
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