Hi Rick - I believe there’s a difference in Dan’s Case in that he’s never been fully Active MM. if I remember correctly you were Stage 3, and with Treatment Meds, you have either greatly reduced to SMM or may be in Complete Remission. So your choice to stay on Maintenance Meds is very different than Dan’s never starting any MM Meds.

If you ever get to 10 -6, Negative, you may want to explore the options of Monitoring without Meds or at least greatly reducing them. Living long term on them comes with their own risks. Consulting with someone like Dr Landgren or Dr Berenson is worth it to help determine the possibilities - both understand the aspects of “Less is Best”

@A MyMyelomaTeam Member
I think I mentioned sometime last year that I met with Dr Landgren at Memorial Sloan Kettering when I visited my Mom in New York City 2019.
Dr Landgren is truly an amazing, kind doctor. If I lived in Florida I'd be going to him too! 😎

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A MyMyelo...

Plenty of people are talked into Treatments that are expensive and come with plenty of side effects. Ask a GP about getting your Natural Killer Cells Tested (a simple blood test to see how well your Innate Immune System can fend off serious infections) and many will say “What’s Natural Killer Cells”.

Very glad to hear you’re getting great advice from Dr Landgren. With the Lifestyle Changes you’ve made, you really have an excellent chance of it never progressing.

The Case Study that Sloan Kettering did for MGUS and SMM showed that a Plant Based Diet, Supplements and Exercise showed these efforts had a very positive impact at preventing progression to full MM.

I researched the top MMS in the country and he was at the top of the list and was located in Florida, Coral Gables. Then, I consulted with other myeloma patients whom highly recommended him. He has been successful and knowledgeable in monitoring my condition, smoldering myeloma and twice now has over ruled the local oncologist (inside of 10 months) who recommended treatment with revlimid, darsalex, velcade and dexamethasone, when treatment clearly was not warranted and the test the local oncologist used to recommend treatment is not the standard of care. The right MMS makes all the difference v a local oncologist who’s goal is to rush the patient into treatment, as in my case, when treatment is not needed.

Well Done - clearly Dr Landgren is looking out for you. I've never done a Spot Urine test - only a 24 hour test, either once or twice and my last was around 3 years ago, during my very active Induction time. We've always relied on Serum Lab results - yours are doing Very Good.

The MM Meds are very expensive and the Doc makes plenty on them.

Try to have Dr Landgren provide Lab Work Orders every 3 months that you take to a local Labcorp or Quest office that return their findings to Dr Landgren.

Also setup a Patient Portal with the Labcorp or Quest and manage & track your progress yourself, with a every 3 month televisit with Dr Landgren - then there's no need for a local Onc - Dr Langren remains and is your Onc.