I was diagnosed with primary plasma cell leukemia in October 2023. I had about 60% plasma cells circulating in my blood and about 60% plasma cells in my bone marrow. FISH test only showed IGH deletion and no other genetic abnormalities. I did VD-PACE while I was inpatient after being diagnosed. I am in my fourth round of Dara-VRD and have tolerated it well and my kappa light chains have gone from 2,400 at diagnosis to 1.16 now. I am planning on tandem SCT with my first in March. My question to the group is if anyone has similarities in that they have no high risk genetic abnormalities and how you have talked to your doctors about risk profiling. We are higher risk with the plasma cell leukemia (and have shorter OS rates) but with no significant genetic issues and a very good response to treatment, I wonder how that might factor into OS expected timelines. I have asked my doctors some of this and they really don't want to give me any specific information, which I guess I understand, but if there is good reason to believe I might have a good chance of getting more than 5+ years I'd like to know. I am 48 and have 19 and 17 kids and have talked with them quite a bit about my treatment plans, etc but have avoided any discussion on expected longevity and just said it is too early to know much on that. Hope all of you are doing well.

Has anyone been diagnosed with ONJ in the TMJ (temporomandibular joint)? A side effect of the Zometa. They are treating mine like osteoarthritis with conservative approach of splint worn 24/7, massage/stretching, and collagen and glucosamine/chondroitin to try and slow/stop the process. Hoping that I don’t lose the integrity of the joint. Curious if anyone else has experienced this and how it’s been treated.

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!!