I got diagnosed in March 2024 at age 67 with stage 3 high risk Lambda MM with the 17p deletion. I chose not to do the SCT and achieved remission in August. Moved to maintenance and have been asymptomatic the entire time with no side effects from treatments. Numbers have been stable, all in the green zone my Kappa/Lamda ratio yesterday was 1.26 well in the normal range. I still question to myself if I am actually a MM patient. My doctor says he thinks I am in complete remission with MRD negative.
Absolutely lifestyle including diet & exercise, spiritual & mental well-being are a must. Possibly genetics play a big part too.
Now at 71, I’m 3-1/2 years since I started Treatment in 2021 for Stage 2 with t4:14. I remain MRD Negative, I’m on No MM Maintenance Meds, I never Collected my Stem Cells and never had a SCT. My Onc says my Labs are now as if I was a person who never had MM. Provided I keep with my Life Style changes, he expects I’ll never be bothered by MM again.
In my opinion (and I’m sure Dr Berenson, who’s not done a SCT since 2000 on any of his MM patients), when you get to MRD Negative at 10 -6 (none per million), it’s significantly better than going through the route of a SCT, due the the very harsh chemo of the SCT and it completely wiping out your Life Time of Gained Immunities and the SCT’s affect on the microbiome of the Bone Marrow, which we depend on for the production of our new blood.
Monitoring with Blood Sample clonoSEQ MRD testing is a completely non-invasive and very accurate way to track your MRD Negative status. I get this test Quarterly. While I remain Negative - No Annual Imaging, No Annual BMB, No MM Meds.
I’ve restored my health to my best Labs in 40 years. Primarily a Plant Based Diet, Organic Foods for everything possible, Supplements (especially high levels of Vit D - I stay at 80ng +/- 10ng) and plenty of Exercise, fresh air and sunlight.
Look up the Blue Zones - they live well to 100+. It’s all about Lifestyle
Larry2 your reports are amazing. I totally agree that lifestyle changes plays a very important part and also the supplements.
I am hoping what you say is true Larry, because there is no doubt you have MM, having bone damage etc. And you have come a long way from there. I do believe I have smoldering but not convinced it advanced to active MM. I had an infection in my mouth in Jan '24. I went to my dentist and they couldn't find anything so a few weeks went by and it progressed to the point that the right side of my face was swollen. So I went to emergency. When they found out I has SMM they put me on IV antibiotics and had me spend the night. They ran a bunch of tests and found my Lambda shot up to 3,000. So I hit the ratio of 100 for active myeloma. But 2 weeks later after the infection cleared it shot back down to under a ratio of 100. They ordered a BMB and already planned for my treatment. But I am still not convinced I was ever active.
I’m also finding more and more people having almost Instant Responses like me when they get DarzFasPro+…
It’s so very important to not get Overmedicated and to prove how a person is doing by getting a few additional Tests like Natural Killer Cells and Blood Sample clonoSEQ tests.
Janssen who makes DarzFasPro did a Case Study that found long term (just a few months of 3 or more) will deplete Natural Killer Cells and by stopping DarzFasPro for around a year will allow our Natural Killer Cells (our Innate Immune System) to recover to Normal Levels)