Thanks everyone for your kind support so far. Being a recently diagnosed MM patient, my therapy has started with VRD. I am 68, so stem cell transplant is out of question. I just wanted to check if I am on the right treatment regime and is there anything that I should worry about as I saw a few videos which say VRD is an old regimen. Also, is there any special medication for 1q gain?

Diagnosed MM in Sept 2017, after a year of blinding back spasms, with 7 vertebral fractures. Misdiagnosed until a large parasegmental lung tumour was biopsed, and proven not to be a highly lethal Pancoast’s tumour, but rather a more tractable case of (11:14) MM. I reacted extremely well to 2 rounds of classic VRD, which crushed my M-band to nothing. A third round saw the Velcade give me peripheral neuropathy in my feet, which lingers unpleasantly, but I went to ASCT in April 2018. A durable remission has lasted so far. I’m on maintenance LEN, although I doubt it does much at this stage (my cancer cells will have evolved). I want Venetoclax, partially because it was invented by colleagues of mine….ironically I worked in cancer research for decades…..and it has shown pleasingly good results for us….I’m aware of course there’s a whole smorgasbord of new agents out there, and a slew of trials of the various combinations. I’m hoping in the meantime that CAR-T, or whatever evolves from it, gets both a lot better….and much cheaper!!

I am now at D+90 after my ASCT. I just had monoclonal serum and free light chains tests. The monoclonal gammopathy test came back with “Serum IFE negative for monoclonal proteins” , which I assume means that there were no monoclonal proteins detected, aka no M spike, right? The serum free light chains test showed very low free kappa and very low free lambda numbers, both below normal. I have IgG kappa myeloma, so low free chain kappa should be a good thing, right? What about low free chain lambda? Are these expected results soon after ASCT? K/L ratio was not calculated due to low free light chains concentration. What is your experience with this type of results after ASCT?

It would be really nice if there was a search function for these posts so we could look up if a question or concern has been raised before and what the replies were. Will also help to build on earlier discussions Just my two cents

My husband was diagnosed with multiple myeloma two years ago at the age of 57. He was in great health prior to that. His cancer is a very aggressive form. When he was diagnosed, he was in renal failure. After undergoing 3 months of dialysis, his kidneys have recovered better than they hoped. He has since gone through a stem cell transplant, car-t transplant 5 months ago. That was preceded by a round of 96 hours of chemo. He developed CRS a few days after Car-t that landed him in ICU. This past week, just 5 months after car-t, they found myeloma cells. We were hoping to get more time out of it but it’s a cancer that is relentless. We are fortunate to have a great Dr at the Cleveland Clinic and my husband has a great attitude. He is such a fighter. They are going to do a newer treatment that involves a hospital stay of 10 days due to FDA requirement. It’s 4 shots over 10 days with a omnew med called “Talquetamab”. Has anyone had experience with that treatment? We are hoping this is the miracle drug for him. We are staying positive.

Hello everyone. My father has been diagnosed with MM recently. I am very confused with the stage of MM he is in The reports states that S beta 2 microglobilin @ 4.58 Serum albumin. @ 3.6 FISH analysis : 1q gain and not amplification While I have researched a lot and according to me as per R ISS , this should be stage 2 But the doctor in one prescription mentioned stage 3 as he said 1q gain is still a high risk. I dint want to argue with the doctor here as he is treating my father but such mentions might disrupt someone mentally as well. Could someone suggest what should I consider his stage to be? Many thanks

Never give up on yourselves. If the process can't find a way, search for a way and never give up on yourselves. Sometimes the answers or the clues to the answers come from within.

Happy Tuesday! Let's talk about our goals for 2024 and how you break them into smaller, achievable milestones.

Greetings. Subject: sudden increase of Kappa light chain in blood serum. I've had non-secretory myeloma now for ten years, and I have been in remission most of the time while taking Kyprolis, which I've been taking for the last 9 years, except for the last 15 months, in which I've been taking an alternative medicine and no other cancer drug or supplement. A bone marrow biopsy about a month ago could detect no cancer, by microscopic evaluation (no Minimum Residual Disease testing). I get blood tests every two weeks and the last measurement shows my serum Kappa free light chains to be 30.7 mg/L. This is surprising because as a non-secretor, my light chains have always been in the normal range (from 3.3 to 19.4). If this is a sign of relapse, my guess is that the cancer clone has changed to a different kind of myeloma that is not non-secretory. It's a bit complicated, because in the last month, my Immunoglobulin A, G, and M, which had been below normal for many years, are now in the normal range. This last fact makes me wonder if my immune system is now finally recovering from the damage done to it by my cancer medications. Or, is the Immunoglobulin response also a sign that I'm experiencing another kind of myeloma cancer clone? My hopes are of course that even the elevated Kappas are an indication that I'm returning to normal, as my immune system goes through adjustment. I agree that it's probably too early to tell, but my main question is, how common is it for Kappa light chain levels to pop a little above the normal range and how concerned should I be? The Kappa/Lambda ratio, which had always been in the normal range is also slightly elevated to 1.85 (normal is 0.26 - 1.65). Have other non-secretors here experienced a clonal change to a cancer that deposits light chains in the blood serum?

Hello, I have recently been diagnosed with active MM after almost 6 years of smoldering myeloma. I am scheduled to start 4-6 months of chemo in Feb with the 4 drug regimen followed by an ASCT (which I assume will be in June/July/August). From what I have read online, I will qualify for Disability. My questions for the group are: - When should I file for Disability? (before, during or after the ASCT?) - Should I work with an attorney or file myself online? - Any recommendations for an attorney? Thank you.