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I'm Interested To Find Out How Many People On This Forum Have Been Deemed Their Cancer Is In Remission And Are - No Longer Taking MM Meds ?

I'm Interested To Find Out How Many People On This Forum Have Been Deemed Their Cancer Is In Remission And Are - No Longer Taking MM Meds ?

I'd like to know how you made the decision to stop the MM Meds.
Was it your choice or doctor recommended - any details would be great.

I'm now MRD Negative. My Doc has placed me on MM Meds holiday. Now with the Jan 2022 Report about MRD-SURE, I plan to stay in Labs Monitoring Mode with no MM Meds and only add back Revlimid, if a future Labs indicates the need. Keeping my fingers crossed.

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

Thanks,
Larry2

edited, originally posted about 2 months ago
A MyMyelomaTeam Member said:

Since MM is currently not curable but treatable, no oncologist should tell a MM patient they are “cancer free”. Instead they should say MRD negative or in remission. I was told by my UCSD MM specialist that I will always be on some type of medication even in remission

posted about 2 months ago
A MyMyelomaTeam Member said:

I was told at diagnoses that this cancer is NOT CURABLE but treable. I have been in treatment since April 2020. Took my M spike number from 3.75 to 0.28 and I am currently on the controlled treatment stage. Which means I take Rx Revelimad 10mg three days a week Monday Wednesday and Friday. Currently I have 13 months of blood draws results in NOT DETECTED. However my doctor has NEVER talked about stopping my Rx Revelimad.
Amen and Amen. Jack

posted about 2 months ago
A MyMyelomaTeam Member said:

My oncologist told me even if I was MRD negative they would not change my treatment
I am on ninlaro for maintenance

posted about 2 months ago
A MyMyelomaTeam Member said:

Hi Greg,

I expect you'd want to know about the percentage of bad plasma and that they do a clonoSEQ test to see what your measurable cancer is. If its 10-6, then you're MRD-Negative - with no cancer cells per one million cells tested. You'd also expect that your Labs will be normal with no MSpike.

All the Best with your new Biopsy.

posted about 1 month ago
A MyMyelomaTeam Member said:

Hi Kathryn,

I'm no expert. I simply look at my Lab Reports and see their high-low ranges to know what's ideal. Also some Labs have slightly different range values. Your Kappa, Lambda, and Ratio look fine. Your GFR is low - its a kidney reference. I believe Its desired to be no less than 60 (may be different for men vs women). I'm typically in the 90s. BUN and Creatinine are kidney related items and I believe your values are good values so I don't understand the GFR. Something you should discuss with your Doc - nothing I know about. I'm comfortable reviewing and comparing my Labs. To learn about them, I simply googled each entry that we either high or low to understand what function it performed. I believe your Immune system (described in simple terms) is your IgA, IgE, IgG, IgM, IgK (they may be others). For me, chemo has driven all of these values very low, therefore, I'm immune compromised. On Friday, I'll get a new Labs from being off meds for 2 months. I'm hoping my Igs show some improvement towards low-normal. If so, it means my immune system is returning towards normal. Your AST and ALT values report on your Liver function. My whole life, mine were always elevated but nothing dangerous and tested over the years as okay. Since MM, I've been taking 4,000 mg Curcumin daily. My AST & ALT are perfectly normal. My wife says she's seen an article about Curcumin helping liver functions. Go figure.

All the Best,
Larry2

posted about 2 months ago
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