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Pjorg45
Multiple Myeloma Discussion • February 9, 2023
Good News: Managing Stable Disease Off Treatment
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Stable Disease? I am a nine year survivor and non secetory. I have been through almost everything except Car-t and Silexinor. After ending Blen REp in Sept 2021 I have been without treatment for 16 months except for focused vegan diet and mushroom supplements plus DEX. I thought I was in stable disease but the past couple months it rose to an NGS of 18,000. An exponential doubling rate of 30 days. When I ended BLen Rep I was sub MRD so that explains why it took 10 months for my number to go up. This doesn't qualify for relapse and a new drug without changes in other blood markers. So I made more changes to my diet and my mushroom supplement routine and today I got a CBC which showed that it went back into the normal range ( Red count of 4.6, White count of 8.5 and Hematocrit of 45.1)-- so today I am really happy. Looking forward to get my CLoneSEQ results from today's BMB ( #45) nest week. My hunch is that it is back from 18,000 to maybe less than 10,000. Although I think these numbers are really high I feel really good and will be happy with these If I can maintain this level of Stable Disease with just the diet and supplements. Certainly better than weekly infusions and $20,000 per year for Selixnor (LOL). We will see but with these CBC numbers it will be a great bike season this summer.
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