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Navigating Watch & Wait With High-Risk SMM
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Hi everyone. I have just found this group and responded to Jenny's question about treatment vs watch and wait but thought I would share what I wrote of my experience so far in case it was helpful for others.
I was diagnosed with MGUS by accident in 2021 and after a bone marrow biopsy last January was diagnosed high risk SMM by my local oncologist who I had been seeing since MGUS diagnosis. I then saw two myeloma specialists and they had very different opinions. One (Northwestern Memorial) felt I was already in overt MM due to the trajectory over the four years of my IgA and I should start the four drug induction toward a SCT. The other (Mayo) felt my four years of data and lack of any CRAB symptoms showed smoldering and recommended increasing monitoring and waiting on treatment. My local oncologist agreed with the Mayo doctor and I did as well based on my own research but it was a hard decision. The Northwestern doctor had advised if I monitored for a bit to get monthly blood draws and my specialist recommended blood draw every three months and whole body low dose CT every six months in order to intervene with treatment before developing any CRAB symptoms. Due to concerns from the Northwestern doc's opinion I opted to do the blood draws every six weeks and the CT every six months. So far my blood test results have been fairly stable and I just had the CT on Monday and there were no signs of lesions.
I feel great and am doing everything I can to stay as healthy as possible - nutrition, sleep, exercise, stress level. Of course it is stressful to "watch and wait" but I did not want to start a treatment I might not need for "years" until it was necessary even though this of course goes against advice for most other cancers which you want to treat as early as possible so it is a bit of a mind messer. I understood that once I started treatment I would not feel as I do now and would probably have to stay on some meds the rest of my life barring advancements in treatment such as some results with Car-t cell therapy.
My specialist said they typically see a slow drop in the hemoglobin towards anemia as the first sign of progression so that is one of the areas I look at when my results come in. So that's where I am at currently.
Barb
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