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MM as well as treatments can destroy your immunity system making you prone to infections and catching anything going around and having a tough time recovering. It would make sense for them to slowly wean you off medications until they see your MM become active again and then taper back up. In most cases they are probably overmedicating unless you have a tough MM to treat.
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Members explored whether multiple myeloma or its treatments pose the greater risk, with many sharing personal experiences of infection,... Read more
It's extremely important to get the required MM Meds when Fully MM Active (not just MGUS or Smoldering) but it's Every Bit as Important to Stop MM Meds once returning to Normal Labs, a Clean PET/CT and a Blood Sample clonoSEQ that shows at least MRD Negative to 10 -5, though ideally 10 -6.
Do Not Let a MSpike be the guidance for receiving Treatment. There's Many Reason for False MSpikes - Trust the items I mentioned above.
My MM was IgA. In 2021, my original 5.2 MSpike had returned to 0.03 is 6 weeks but then became 0.1 for the next 5 months until I got the Lab Test #123218 that cancelled the False MSpike that DarzFasPro quickly produces.
I just found that an original MM Active IgG MSpikes can persist for many months (6 to 12 months) even once a person has responded to Treatment. I have a friend with very active MM. His IgG was 8,000+ and his MSpike was 6+. Now within 2 months of DarzFasPro, Kyprolis, Dex and Revlimid (started after one month), All of his Labs are Completely Normal again, except that he still has a 1.0 MSpike.
From Perplexity AI:
M-spike zero on SPEP Month 6–12 — last to clear due to IgG 21-day half-life
Knowing this, since All of his MM Labs are Normal, he's getting a PET/CT and a Blood Sample clonoSEQ to Accurately know his MM Activity Level to make an informed choice of what Meds he wants to Received. All of this is being coordinated with his MM Specialist.
MM Meds are Extremely Strong Meds but they also can create serious damage to our Immune System and our Organs. Overmedication is as serious, if not even more, than No Medication.
MM Treatment is too much - By the Book - One Plan Fits All Until It Fails. It needs to be Personalized to absolutely Minimize Serious Side Effects.
Revlimid is poison. You’re required to interview with a Nurse monthly and to accept that you acknowledge that you are taking poison, in order to receive your next delivery.
Find Dr Costa’s video on HealthTree - he’s the creator of the Masters Clinical Trials. He’s directly stated that once MRD Negative to Stop MM Meds, specifically to have them to able to work for you in the future, if you ever need them again.
In 2023, 6 weeks after starting treatments for my single Plasmacytoma I retested as MRD Negative at 10 -6 ( none per million cells tested ). From that point I immediately phased out the Revlimid, Dex and Acyclovir, all within a month.
I remain MRD Negative, on No MM Meds and require no older age meds (now at 72) and have excellent Labs in all categories.
If I ever become MM Active again, I’ll have access to all these meds and they’ll be able to help rather than be in the category of a “Failed Meds”.
Most importantly is due to the excellent condition of my Immune System, I’m able to fight off infections and others that might reactivate my MM.
Living on MM Meds leaves people immune compromised and a sitting-duck for all sorts of opportunistic diseases.
Tomboy, even without the cancer risk Revlimid can wreak havoc on your body. It can also save your life, so it is a tricky situation until they find something as effective without the side effects. It is so effective that some stay on 2.5 mg for decades and have few side effects. Then there are those treated earlier that were on 25mg for decades and are still around with their bodies paying the price. And of course it stops working for many too.
PREtty clever, Nick!
"Move it or lose it", first step is the hardest ( or getting off my assets and just do it), pain hurts, you'll feel better for doing, putting off only causes stress.
No famous people, just stuff I think..about
@A MyMyelomaTeam Member
Why are you getting a SCT - it’s important when all else fails (though now the Car-T seems to be the preferred choice, when absolutely needed).
Please read Dana-Farber’s Dec 2023 Press Release. They stated to “Keep the SCT in Reserve” when Induction provides a “Very Good or Better Response”.
Their Press Release cites the risks of secondary issues (infections, cancer, organ damage, etc) should be avoided when possible.
I’ve documented plenty of this at my Story @A MyMyelomaTeam Member - Though I started in 2021 as Stage 2, IgA Kappa with t4;14 high risk, I never collected my Stem Cells (due to the chemicals involved) and No SCT, thanks to my induction of DarzFasPro + RVd, I remain MRD Negative, on No MM Meds and I’ve rebuilt my health (diet, supplements, exercise) to be my very best ever. Now at 72, I also require no older age meds of any sort.
If I ever become MM active again, I’ll take the appropriate MM Meds, for as brief as possible and then return to Monitoring Only.
Based on my Research, I’ll never collect my Stems Cells and never consider a SCT/Car-T - both produce significant damage to the Bone Marrow’s Microbiome, leaving a person Immune Compromised for many years.
There’s a very interesting Case Study Trail that was discussed at the 2025 ASH Conference - there’s a In-Vivo Car-T that does not require the Chemo to Wipe Out the Bone Marrow’s Immune System. It’s early stages yet this Clinical Trial is showing excellent results.
All the Best
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