Hi my name is Geri! I do have copies of my numbers, I need to compare them. There are days I feel a little better and than days I hurt so much! It all started with high fevers,, and several doctors, and one dr. Did a bone marrow and found this myloma sitting there. Who can help me, I need to know what theses numbers stand for? Can some on help me? Vvvv V V V

Friday, October 10 I go for T-cell Collection. Monday, October 13 I start heavy chemo Daratumumab, Dexamethasone, Acyclovir and Montelukast for 4 weeks. Then more chemo for 3days starting 5 days before Car T-cell infusion. Estimated Car T-cell infusion November 10. I am scared to death. Has anyone gone through this? The side effects can be horrible.

This is terribly naive, but how does she determine whether their oncologist is a MM specialist? My rheumatoid suggested that I see an oncology. Living in metro Philly, I immediately contacted the University of Penn Abramson Cancer Center and was given an appointment with an oncology (MM Specialist??) and diagnosed with lambda light chain in Dec 2023. She immediately started testing: step by step (not in this order) she did bone marrow biopsy; bone density; PET/CAT; Total tumor localization study; FISH; karyotyping; of course much blood work etc. I won’t go into details on this post, but have taken Rev; Pomalyst, Dara faspro; Dexamethasone; Zometa. Now on Carfilzomib/Darafaspro/Dexamth/periodic IVIG (she waited months at 300 until recently I had three infections in 2 1/2 months), Zometa, daily Acyclovir, Aspirin,Tylenol, Prilosec, Maybe others. She seems to depend on her SRNP/MSN to respond to my texts, and sees me personally 1x/month. From all that Ive seen, I’d guess she is a MM Specialist??

It’s been a while since I posted. My husband was diagnosed 3 1/2 years ago. He has 414 and another. It attacked his kidneys and he was in renal failure when he was diagnosed at age 57. One of the ER’s here missed it and called it covid. They never did bloodwork. After treatment, dialysis, and kicking down some of the myeloma, he had a stem cell, car-t and other treatments, but they didn’t work. He is on Dara + Talquetamab. He has been on it for 14 months. It has its side effects but it’s working. . Is anyone else on that combination? He has an exceptional Dr at the Cleveland Clinic He is one of the absolute best and cares about our family. Cleveland Clinic is great but not all doctors there are equal. We are lucky enough to have one of their best. My husband is alive today because of him.

My husband Kappa Chain Light has raise from 2300 to 3300 after chemo treatment has this happen to anyone else

Anyone have MDS? My husband does and after 10 months on Vidaza-AZACITIDINE, HE DOES NOT NEED PLATLETS OR PLASMA, EXCEPT FOR VERY RARELY. Does he need to stay on forever? He is older. Is it ever cured?

I was diagnosed in Nov 24, went through induction therapy 7 cycles and had ASCT Had a bone marrow biopsy in March of 25 3600 Good Plasma cells and 3200 cancer plasma cells. ASCT July of 25 then another bone marrow biopsy in Sept 25 my good plasma cells were 1800 and cancer plasma at 864. MRD Positive, at this point what is my best option to reach MRD Negative? Is this normal or common not to reach MRD negative? Is it still possible to reach MRD Neg? My understanding is people who reach MRD Neg tend to stay in remission longer.

I had an ASCT a year ago. And I have relapsed already. They are recommending a CAR-T. If anyone has had both , how do they compare. My ASCT took about 9 months to recover. I’m 78 year old woman with high risk.

So here is a question I have and I know it's been widely debated and likely will continue to be debated. The question is whether ASCT is still strongly supported by myeloma experts or is the trend moving toward collecting stem cells and freezing them for a future ASCT if needed? Anyone who chose to defer transplant and now regrets it or anyone who chose transplant and now wishes they had not had one. A clinical trial that has been offered requires the ASCT so there is no pulling back from this versus doing quadruplet therapy and then based on MRD negativity having the option of doing ASCT or deferring for later treatment.

Hi, My husband got diagnosed with Myeloma just 3 months back. He is in his Induction since August. He is getting his treatment in Kaiser from a hematologist. When I joined different groups to know more about myeloma, everyone suggested to connect with a myeloma specialist. I would like to know how important it is to add a myeloma specialist in your treatment group and can we still continue with our current hematologist. He has an appointment with his doctor next week. We are a bit confused how to discuss this with him without hurting his feelings. Any advice on this would be greatly appreciated. Thank you in advance

I have high risk (1q gain) t14:16 MM + AL amyloidosis. I am in induction but my current hospital has expressed concerns about my eligibility for ASCT transplant at their center due to the amyloidosis. They want to see more organ improvement for their approval so my dr has suggested lengthening induction to 6 months from 4 and re-evaluating. It seems up in the air right now. Currently on Dara - Cybord. Has anyone else gone through this, where they decided to delay or not do it at all? Curious to hear about others exoerience with either delayed transplant or alternative treatments for high risk myeloma with or without amyloidosis.

HIVES! Anyone encounter body hives and/or scalp hives after their ASCT? Looking for anyone who may have developed a "new" medication OR food allergy after ASCT. I was never allergic to anything prior. I started to develop hives about one month after my transplant (APR 2025). At that time, docs started me on BACTRIM and acyclovir. The hives continued coming. My scalp was the worse, but random hives elsewhere also. Went to a derma and continued with oncology, both would tell me "it's an immune reaction." OK, but please fix this!!! I would use topicals, which helped some, but prednisone would clear everything. To keep this short, I stopped bactrim, acyclovir and do not take my REVLIMID at this point. I STILL encounter body and scalp hives. NOW, I am wondering now if this a food related allergy I have developed. I will say, SEPT 2024, when I initally started darza/K/dex and revlimid PRE ASCT, I always had a mild rash. Tolerable but nothing like it is now. Anyone else experience this?? THANK YOU! in advance.

Pangea vs. Mayo 20-2-20 Model Hi. Newbie here. VERY thankful to find this group! Diagnosed with HRSMM earlier this summer. Just starting, really. Have had just one conversation with an MM specialist. He used the Pangea model vs. the Mayo Clinic's 20-2-20 model in thinking through my situation (active surveillance). The Pangea 2.0 model is a VERY different progression % for me than Mayo Clinic's. (My M-spike is just over 2.0 and I have a 1Q gain and some other chromosomal abnormalities). Has anyone else had this experience of comparing the prognosis models and scratching their heads?

Hi everyone! It has been 21 months since my ASCT and I am MRD negative. I am taking daily Venclexta and monthly Kyprolis and IVIG infusions for maintenance. Here's my dilemma....I have been recognized by Virgin Unite for my non profit work and awarded a Caribbean cruise with Virgin Voyages. To say that I am honored is an understatement, but I am also hesitant to accept due to the fact that I will be on vacation with 2500 other people in close quarters. Has anyone else been faced with making a decision like this, and what did you ultimately decide? I have asked my oncologist for her opinion and I am waiting for her response. Thanks!

Has anyone had relapse with extramedullary disease. Found on PET CT. Don't see much information or discussion on this site? MRD positive at 4 x 10-4 BMB. Lambda light chain 49mg/l Kappa 5 mg/L Started DaraVd 5 weeks ago as not eligible for any trials at this point. Will have scan to see response.