Greetings! Someone recently asked me if I was in the “Induction” phase and I had no idea how to answer so I texted my oncologist. She wrote back, “The stages of where you are on treatment does not really apply to you as we feel that you'd be transplant ineligible. We'd say you're on your second line therapy. “ Since I’m on dexamethasone, Carfilzomib & Dardfaspro that I’m on DKd but no one ever told me that, which prompted me to respond, “ Being in this particular 2nd line, I assume I’m DKd. …When you say I’m ineligible for autologous stem cell transplant (I assume you’re referencing ASCT) I assume also that doesn’t rule out CAR-T (autologous or allogeneic)? No?” This was just an hour ago and I of course haven’t heard back. They are VERY prompt so I’m fully confident I’ll know soon. Any thoughts about the clarity of our text exchange?

I just heard about in-vivo CAR-T, where they jab you with some magic stuff and it generates the modified T-Cells right in your body. Has anyone else heard about this? One goal is to administer it as soon as someone is diagnosed but also as an out patient service because it doesn't require the multiple visits and pre-work. Sounds really cool and I'd like to hear from anyone who knows more.

Hello are there any support groups for non-secretory that meet monthly.

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I have been taking 10 mg Revlimid 21 days a month for 3-1/2 years. Within the past 6 weeks I now have neuropathy that started in my feet and progressed to my calves. Any help from others will be most welcome. My MM is well controlled but this new development is quite difficult to deal with. I'm seeing my doctor in a few weeks but would appreciate any comments from others as well as how they deal with this if they have it. Thanks in advance for your help!

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.