Hello everyone, For those on Pomalyst, Centerwell foundation may be able to help with your costs..

I had my SCT in July, 2018. I went immediately into remission. I was on revlimid for about 1.5 years. I had terrible spasms and cramping that I believe was caused by the revlimid. I went off revlimid in June, 2020 and my numbers have remained stable with no sign of the Myeloma. So far I've been getting lab work every 3 months with no problems as of yet.

I'm having my second stem cell transplant at the beginning of March. It was meant to be this week, but they didn't manage to collect enough stem cells. I was given GCSF for 4 days and then a Plerixafor injection the night before the second day of collection. I was on Carfilzomib with 20mg of Dex once a week prior to this. It's only been two weeks without Dex but I feel so low. Does anyone know if this can be withdrawal effects or a response to the Plerixafor? I'm normally a very optimistic person and don't really get these feelings of sadness. Thanks.

I got diagnosed the beginning of last year and have spent the rest of the time getting second, third, fourth opinions. I spent most of December in the hospital with Covid and Pneumonia; the doctors convinced me to start Chemo. I talked to two men recently who have gone through the RVD treatment and are on maintenance now. What will be my experience ? Every body is different… How much does it cost? Ever body is different… 68 years old retired on my organic farm living the dream Still. Any more advice?

Hello and Best Wishes to All of You! I was diagnosed with MM in July 2023 and have been through eight cycles of VRD. Fortunately, I'm currently in remission, though PN and some back pain continue to be problems. I've also enrolled for and been randomized into a CAR-T therapy trial called Cartitude-5 (using already FDA-approved Carvykti from Janssen/J&J) for newly-diagnosed MM patients. The goal of the therapy is to prolong progression-free survival (i.e., PFS or remission) without maintenance Revlimid therapy. I'll be reinfused with my genetically modified white blood cells on February 20 and stay in the hospital for two weeks afterwards for observation. Fingers crossed.

I am now in the maintenance stage of my myeloma journey. The maintenance includes Velcade (bortezomib) injection every two weeks. I get a skin rash at the injection site. If done correctly, the afflicted spot is relatively small, but it’s still a bother. I use Benadryl cream for the first 2-3 days and it helps with itching and initial healing. I would like to know if there’s another topical cream or something that I can use once the initial redness and itching is gone to help with faster removal of the skin discoloration. Any suggestions?

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.