How soon after Car T did you decide to be around people. Go out to eat etc ? My immune system is recovering. My absolute neutrophils are almost at normal range as are my white cells. I did receive one dose of IVIG. I am 39 days post Car T Thanks

I am about 150 days post stem cell transplant for multiple myeloma. All my labs are normal except for the immunoglobulins and protein sep. when will these move to the normal range? I am currently in remission and will begin maintenance therapy soon of revlimid and daratumamab., along with zometa.

Effective October 1 most telehealth has gone away. Reach out to you provider and see if they have alternative ways of meeting with you.

Does anyone have any recommendations on how to get rid of numbness and tingling in the hands and feet/legs?

Clinical trails and financial support if you have to travel and stay in another town? Some experiences would be of interest. Thank you!

I need help! I do understand we are sick, but not doctors ! For 2 nights , I wake up with pain in my lower back it goes across my stomach and runs down to just below my knees! There are so many markets on my legs like someone beat me up. Finally my hubby will wake yup, because I am screaming so so loud, I put on my pain patches, I take a pill the oncologist told me to use when I am in that much pain, yes it works and I go back to sleep! I am freezing, an I have 2 days to drive home. My question is that pain from MM? They put me on water pills, I had been floating in my own water, can someone tell me what is multi myloma?

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?