Just heard back from my AON Nurse. She's fine with the Creatine supplement. I'll check in with my GP and the gym trainer as well but everything I could find indicated it was okay and helpful.

It lets the muscles absorb more water for better recovery during activity to help build lean muscle. Looking at online pictures of muscle-wasting, they show a normal muscle and then a taught thin rubber-band of a muscle.

Early on, when going to PT, to try and gain strength to be stable on my feet again, they said my muscles were in very tight knots - more so then they typically see - Thank you Dex ! Now, as I'm regaining my leg strength, I can stand and balance 30 seconds on a single leg - this was one of the PT Goals.

All my Docs have said weight bearing exercises will strengthen my bones. I'm currently mild to very mild osteopenia in a total of 4 places - 3 being along my L-spine region (the repaired L4 was omitted). Hopefully, in a year, a follow-up bone density test will show improvement. I'm working at that goal.

Larry -

Thanks so much for your detailed responses -- it really helps !
hey...lets talk sometime, so much faster for detail and debates, rather than this posting, and we think alike !
ive got other product recommendations
researching neuropathy
body building
sleep enhancement
cbd
the docs dont pay any attention whatsoever to supplements
its all on us !!!
im at sevenone4 area, 678 flip that backwards, seventyninefifty
no rush, txt ahead any time

Note that in the Masters Trial
they used the standard of
MRD negative 10-5
with the patient testing at that level
twice in a row
to qualify to go on the MRD-Sure no meds, monitoring only

The Masters trial then noted
a secondary "Exploratory" goal
testing to see how many trial patients reached
MRD at a 10-6 level

The number of patients who reached MRD 10-6 was significant and encouraging,
but less by far than the number of patients that reached MRD 10-5

They are obviously trying to see if MRD 10-5, achieved twice in a row, is good enough to go off meds long term

Hi Patricia - I expect the Link I'm providing below is the same MRD-SURE Report that you've outlined above. Just reading it again, their Goal for Monitoring is 10 -6, based on the new clonoSEQ testing method.

Though I did not receive the exact same Meds and never had the SCT, since I achieved the same Goal of 10 -6 (2-1/2 months of Induction and 3-1/2 months of reduced levels as Maintenance ), my Doc (very familiar with this Report), placed me on Monitoring Mode, without any ongoing MM Meds.

My 3-1/2 months of reduced levels Maintenance is similar to what someone would do as Consolidation after a SCT. I simply elected to not do the SCT and got to the same Goal, as if I had.

Today, I received another Labs - No MSpike for the 3rd Labs (every 6 weeks) after my first MRD Test. In a week or so, I'll have the results of my second MRD Test. I'm sure it will be 10 -6 since my Labs are Normal again and there's no MSpike.

Don't know if its helped but I expect it did - I've been on high daily dose of C3 Curcumin since last Nov. 2021. I'll continue to take it indefinitely, in an effort to have it assist in preventing a relapse. More info on this in my Story and Updates.

MRD-SURE Report Link:
https://www.cancernetwork.com/view/mrd-adapted-...

All the Best - Larry2

Hi Larry -
Im Patricia, the one who was going to look up a June 2022 clinical trial report, that said that MM patients do just as well on Induction and Maintenance meds, as they do with Induction, Transplant, and Maintenance.

I had printed that report -- it is somewhere in my "stacks" of paper
in the house -- I will eventually find it.

But in the meantime, I did find an important recent clinical trial -- the Masters trial -- that announced interim results in Dec 2021. That is exactly when I first met my City of Hope doc here in Los Angeles ...

I saw her again June 2022, and that is when she and I first discussed this "new" result just out in June (...the paper Im still looking for in the house...),
ie the paper saying that patients do just as well with transplant versus no transplant.

My point being, was the trial I found in June, referred to by my doc, actually the ongoing Masters trial, just releasing a new or ongoing interim finding ?

Perhaps it was ...

At any rate, I posted the entire Masters Dec 2021 article in this group, and then I wrote my own brief summary.
Did you see my postings ?

I try to copy and paste these complex papers, and re-read them,
and then using my Copy & Paste in an email to myself,
I dont change anything of the original text,
but rather I break down the long detailed quantitative analysis paragraphs into simpler sentences,
and then divide sentences into even shorter phrases, ...

,,, It is so much easier that way, to glance at the data, and visually "see" the patterns.

Sorry to hear they couldn't collect enough for a FISH test. Not a clue why they couldn't harvest.