[Multibilly]

Re: Smoldering multiple myeloma or MGUS?

by Multibilly on Wed Jan 20, 2016 7:56 pm

JDH,

Well, assuming you have SMM based on your BMPC %, there is a relatively new way to slice risk of progression for SMM patients:

https://myelomabeacon.org/forum/smoldering-multiple-myeloma-review-article-t5559.html

In a nut, you need a lot more information to accurately map your possible risk-of-progression on to the above criteria.

I used to be a lot more preoccupied with risk-of-progression figures until I discovered I was now classified as being at a high risk of progression using the above criteria. Given my markers have remained pretty stable over 3+ years and I have been classified as high-risk for all 3+ of those years, it finally sunk in on a very personal level that all these published risk-of-progression models represented stats that I may or may not experience myself.

It also finally occurred to me that I am currently not going to do anything differently in life based on whether my risk-of-progression is determined to be standard, intermediate or high - so why worry about the distinction unless one is completely sold on starting early treatment?

[jdh101]

Re: Smoldering multiple myeloma or MGUS?

by jdh101 on Thu Jan 21, 2016 9:29 am

Thanks. I think that being so focused in trying to know the ultimately unknowable is not helping. It's just hard to let go of. This is my third cancer in 5 years and I'm just so tired of the treatments and tests. Now the waiting and watching gets added in. What can you do?

I see your point. Live well is the best way to go. I'm working on it. Thanks again for all your answers.