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I am newly diagnosed I have stage 1 MM. doctor is putting me a few meds which is saying is a low form of chemo. and Suggested I go get stem cells ready in case I may need a SCT. Is it inevitable that as this progresses I will definitely have to do the stem cell transplant?
Depends on your age. If you are over 75, they win't do a SCT. Also depends on how well you respond to chemo. My husband is 79, stage 3, high risk, non-secretorial MM,
and had 70 percent cancerous cells. Prognosis at first was bleak but after 4 months of RVD and then just VD, he is in remission with .2 percent of cancer cells. He was too old for SCT but responded very very well to chemo. Every case is different and remember YOU are the patient and YOU need to advocate for yourself and make the decision of what you think is best for YOU.
Have been in remission for about a year now. My doctor told me ' your numbers are so good there is no sense in doing a stem cell. Actually they are trying to get away from doing those.' Was glad to hear that as I was nervous about it but would do what had to be done. Live in Iowa and doctor in Lincoln Nebraska.
Keep positive. I've been battling this for 12 years and have used up most of the options. But, I've circled around again and some of the older meds worked. I no longer hope for remission but stability of the disease.
I had med - high dose cytoxin to bring it all down at 1 point. And it worked. Also had doxil around that time.
Keep us posted and stay positive!
Stage 1 is MGUS. Smoldering myeloma is Stage 2. Are you sure you have stage 1? I have SMM and no treatment needed now except the bone remodeling drugs. No chemo yet. I get labs again in 2 months and if there are significant changes, then chemo. It all depends on your lab work on when chemo is started. Stem cells are likely in one's future with MM. Buts Its an individualized situation.
Sounds like you are doing good! If you started out at 60% and are down to 30% you are making progress, even if a bit slow. When is your next bone marrow biopsy? If your numbers continue to creep down, you might want to ask your Doctor about a bit more agressive treatment plan, I started in Dec 2020 at 90%. Did Revlimid and Valcade for about 3 or 4 months and they went down to 50%. Doctor then put me on another treatment plan called HPER-CVAD for 2 months which meant being in the hospital a full week each month. That brought me down to 30%. Have just started a 3rd treatment plan of DKD last week which they hope after 2 or 3 cycles will have me ready for a SCT in the late fall or my year long anniversary of diagnosis. My best advise is to just take it a day at a time . Do not dwell on the 'what if's, Deal positively with what you are given each day and, if you are a Believer, turn the rest over to God. Also, find the movie "HERO' with Sam Elliot on Amazon or Netflix. It has a very good message.
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