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I see this going up.
I have a hard time getting any information out of my Oncologist.
Any suggestions on how to get information out of her.
All
She says is we are monitoring at times she says I don’t have Multiple Myeloma, and other times she does say I have Multiple Myeloma. So confusing.
I am taking Revelmid 15mg.
Hi Vince, are you able to get access to your patient portal? It helped me to look up my labs so I could understand why they were too low or too high.
Me neither. I am seeing a different Dr. On Mon. At Dana-Farber.
I have smoldering MM but don’t see a lot of others here that might be experiencing it??
Hi Kathy- I am lucky I can tolerate tumeric well. I do take 8 grams. I do them across the day so I can prevent stomach issues.
Question I have:
Should I be in this group if I only have SMM. Everyone else in here has MM. Just confused and concerned, but this group is very helpful in gathering information. On what I might be experiencing at a later time........
I started at MGUS 7 years but now at SMM just 3 months blood work
@A MyMyelomaTeam Member Having high IgA, your question interested me enough to look it up. Here's a link to an article although I'll freely admit I understand about 10% of it at best. Yes, there are… read more
Neither do I, lucky I'm going on 4 years and still holding at SMM. I wonder what will happen if it changes to MM, what treatment will I have to do and etc. but I figured why worry now, that won't… read more
Hi Lynn,
I was diagnosed with MGUS in 2020 but I may have had it since 2011 or before. Last March 2023, I was diagnosed with Smoldering. I have IgA Kappa.
Paula
I currently have smouldering myeloma which doesn't need treatment at the moment
My doctor has said that I will probably need treatment next year
I would like to hear how it has progressed from Smouldering Myeloma to Active Myeloma.
I am 60 years old and was diagnosed after a routine blood test in 2020. I haven't got any symptoms yet but I am being monitored every three months.
I am new to this community but I am pleased to be here. Just learning how to navigate the system. I am hopeless with… read more
Thank you so much Bedebaby. You are right of course that I should carry on with my life and not worry
Hard to do sometimes though. But I will try
Thanks for sharing your story with me. I wish you… read more
So confused, it took drs. 6 years to find anal cancer at a stage 4, how is this smoldering?
The 2 cancers are unrelated
Thanks made appointment to get a second opinion.
