I have IgA lambda MM diagnosed in 3/2025. The uncertainty has been the difficult part of this process for me. I went through drug induction (Darzalex,Carfilzomib, dexamethasone and revlamid, followed by autologous stem cell transplant and restarted chemo in February, but only 1x/month. I also was diagnosed with metastasis to my spine last March. I have not had overwhelming side effects from the chemo, but the pre meds and learning about the side effects is important(though can be anxiety producing). Take small bites of information at a time(eating the elephant).
I heard a lot of stories from what to expect for stem cell transplant- many frightening and a bit overwhelming. I chose to put my faith in God and the process . I also chose to be a participant and observer at eh same time, thing that I might or might not get bad side effects. There were some side effects but my team helped me manage them.
Finances area. concern as I have not worked since 4/2025 and had no short term but have long term disability. It was suggested that I apply for SSDI(I am 64 but wasn't ready/planning to retire), which I did do and received in January for a limited time to be reviewed this fall. If your local cancer center has a financial person(ours in Maine does), connect with them. If you have a financial planner, reach out to them. This diagnosis has made me and my husband start considering many options.
I exercised (walking, strengthening and gardening/yardwork) until transplant. I think I did well with minimal symptoms after transplant because I was in decent shape and not really sick.
Staying positive is the most important thing. I choose to see this as a chronic illness, focusing on doing what I need to do and trusting the medical field to do their part. I have met(virtually ) many MM patients who are more than 10 years post diagnosis who are doing well. This and the continuing research give me hope for my future.
Give your self some grace, limit your time on the internet. Use trusted resources.
You and do this!
Sending prayers and hugs.