After two years of being in remission after a SCT my light chain numbers are creeping up. I am thinking that a second SCT would be an option. I did well with the first one and I am in pretty good health (despite the myeloma) .I believe my doctor will be recommending a CAR T cell transplant. I don’t want to use the option I would like to reserve it for the future. Any thoughts …..

I cannot really add much to a discussion. At this time my myeloma is smoldering for about 6 years. At this time I have blood tests every six months. My Dr. Is in Houston where we moved from 2 years ago. I’m now looking for a Dr. In the Corpus Christi area.

My advice to all with MM is to find the best healthcare providers you can. Not all doctors are the same. I was diagnosed in 2018, had heart valve replacement surgery, vascular surgery, kyphoplasties, stem cell transplant, blood transfusion, 15 months of chemotherapy , and Revlimid. As of last week, my hematologist-oncologist told me the cancer is no longer a concern. Yes, it’s there but the number of cancer cells, originally at thousands per million are now at fewer than 10. Where are the best doctors? A lifetime of healthcare for my family and myself has led me to a publicly funded university hospital. The doctors spend two days a week in clinic, two days a week teaching, and one day a week researching in their field. They don’t order unnecessary tests or procedures and they will be among the first, if not the first, to learn of a cure.

does anyone know if some people take curcumin instead of dexamethasone....someone had mentioned that to me since my husbands potassium was going up....

For those who receive IVIG infusions on days that you do not receive any other treatment, do you premedicate with dexamethasone?

Hi all I understand that fatigue is often caused by both myeloma and the side effects of its medication. I’ve also gone through various solutions shared on this platform. However, I wanted to ask if any specific strategies or remedies have worked particularly well for you, that we could try. Additionally, are there any particular things we should be cautious about? There are some days when my father feels extremely low, tired, and irritated, and I want to ensure we are doing everything we can to help him. 1)He does his everyday walk and workout. 2)He takes his electrolytes. 3)Has a diet filled with fruits and green vegetables. 4)Haemoglobin is all good, but the RBC count fell slightly this week to 3.9 5)Sleeps well.

I also have a lot of questions about the stem cell transplant and what that actually is all about. What are the reasons for doing it bs not doing it. And what actually is it?

Hello everyone 😊 is there anyone with mm in AA? My fiancé (and I ) both are. He has the diagnosis. We are hoping for someone to relate to that is also in AA and in or has went through a similar situation. He is also 41 and we were in the midst of planning a wedding and about to start a family. He has been getting the injections in his stomach and taking revlimid. overall he is handling treatment well, considering. His numbers have dropped significantly so that’s hopeful. I just have a lot of fear for our future life plans

Good day all: Age 69, female. MM/MGRS (kidney involvement). Four months of induction chemo. ASCT May 28, 2024. Now on Revlimid 10mg. and Darzalex shot monthly. Diagnosed with MGUS in 2015. Stage 3 kidney disease. I have a question? I was looking at my FISH study. Has any one else had a FISH study done with their bone biopsy. The FISH study looks at chromosomes involved with MM. My FISH was rather discouraging. I have 3 abnormalities, Monosomy 13, I have a duplicate 1Q25. I have a translocation at IGH/FGFR3. That makes me a high risk for what is called a "double hit". Is this something else I need to worry about, or is this a common finding with this disease? Just wondering what the FISH study of others showed. One interesting thing I learned is what causes these abnormalities; most of the time they are random mutations that happen in-utero. That was mind blowing learning that fact. I have racked my brain trying to figure out what I could have done to cause this. This is not my fault. I was born with this. I have carried these whack-a-doodle chromosomes all of my life. I live in the country, and driving by fields it seem there is always a crop being sprayed with something. We live 26 miles from a nuclear power plant. Those are the types of things I wondered about. But nope, born that way. Here is hoping 2025 is a much better year for all of us. My husband had a large brain bleed last August and had to have surgery. He is fine now, but 2024 was a tough year.

Hi all I am 63 years old and was diagnosed with Multiple Myeloma in January 2024 It started with a compression fracture of my T6 vertebrae I had spinal fusion surgery in Miami and returned to Trinidad 3 weeks after. I started on DRVd treatment weekly. I completed my treatment in December. I will do another Bone marrow biopsy next week and the plan is to go on maintenance treatment for one year which will be Rivilimid 10mg ( 21/7) and Darzalex once a month . My side effects over the past year were not bad at all. Bortezomib probably caused the most issues. If anyone is on a similar path, please let me know how it has been for you during your maintenance year. Also, I had my last PET scan in July which was clear. Besides blood work and maybe another BMB during the year, do you repeat PET scans?

my husband is on pomalyst, dara and dex for 1 1/2 yrs.....his glucose and potassium started to rise...trying to watch what he eats and drinks alot of water.....any other suggestions....he goes in friday for labs to ck on his levels

I am new to this group. I am 58 years old. I was diagnosed with MGUS in 2017. My Kappa Lambda ratio then was about 9. My M-Spike was around 1 and my PET Scan was normal. My Bone Marrow Biopsy showed 5% cancerous plasma. My numbers slowly increased in general for first 3-4 years. Since then the pace of increase has accelerated. My last labs showed my ratio passed 100 (118) and M Spike is at 2.35. Had a PET Scan in October 2024 which was clear. I have not had another bone biopsy since my first in 2017. My myeloma doctor at MSKCC said if my Kappa goes above 50 (at 46 now) he will order one. He said with my hemoglobin at 13 he didn't think there was heavy involvement in bone marrow. I feel fine with no symptoms and swim daily for 45 minutes. Perhaps I've been googling too much but I thought that a ratio above 100 meant active myeloma but honestly I have no idea if I'm considered at MGUS or Smoldering stage. My doctor at Sloan said light chain ratio is not the most important marker. I should mention I have Ig G Kappa. Anyone else have similar numbers and also not taking treatment? Just reading about all the GI issues with Revlimid are worrisome to me as I know this is used in induction therapy. Has anyone in here not experienced GI issues using Revlimid? Thanks in advance for your comments.