I am looking for anyone who has participated in allo CAR-T to potentially speak with one of my coachees.

Anyone here taking Xopovio orxenclexta? how's it working?

Hello! I’m currently smoldering since December 2022. My initial fish test showed abnormal with 1q gain, four copies and 9p24(jac2) gain, 3 copies. I just had a new bmb in March, the fish results indicated everything was normal. Does anyone know if it is normal to go from abnormal to normal without having any treatments? Have anyone experienced this?

Amyloidosis Support Groups has in-person meetings in a few cities in April; I highly recommend those meetings! https://www.amyloidosissupport.org/upcoming_events.html

I am a multiple myeloma patient from Kenya in East Africa. I was diagnosed with MM on June 2022 after many years of health problems and intractable epistaxis from 2020. Due to lack of facilities in my country I decided to go for BMT in India in late 2022. I had a successful transplant on March 2023, I am back to my country and I am currently on Lenalidomide during this post-transplant management period. I have been responding well apart from very low white blood counts which are regular but I normally get Neutas immunotherapy booster from time time.

Anyone else here dealing with Stage 3 kidney disease also? Any advice? Might have to switch meds as the dara/Pom doesn't seem to be being very effective...

After my first relapse last fall, I was placed on a DKd regimen. Very effective, but the Kyprolis causes my heart rate to elevate by 50% the night of the infusion, which makes it impossible to sleep. The Dex doesn’t help either. Has anyone experienced this and found a way to lower your heart rate and overcome the insomnia?

Hello, I started relapsing after only 6 months post-SCT (which was last August (2023)). This is my second relapse since being diagnosed three years ago. At that time I was given Dara-RVD and then maintenance until I had my first relapse in March 2023. Will now be moving into CAR-T, changing up my medication as a bridge. Was wondering if there are any folks out there who relapsed early after SCT and what your journey has been like since? I have translocation 4:14, no other mutations. Am admittedly very worried about this.....thank you!

wondering if anyone here has any experience or insight with regard to kidney recovery during induction? Lambda light chain myeloma was diagnosed after my spouse's blood work showed creatinine levels 10x above normal range. He's just started his second cycle of CyBorD-D and his light chain number is way down, creatinine levels dropped by half but still very high. eGFR is improving but slowly. The nephrologist recommended a wait-and-see approach before starting dialysis. I can't get a clear sense regarding the likelihood and/or extent of kidney recovery

I am in remission (IgA MM) based on bone marrow results after my first 8 month round of Velcade-Darzalex-Dexamethasone-Revlamid. My biggest hurdles have been massive blood clots (saddle & all 5 lobes) in September 2023 for which an emergency thrombectomy was performed and I am now on Xarelto. I also had lumbar fractures & had 3 kyphoplasties in August 2023 which was miraculous & got rid of all of my pain. Now I am riddled with severe pain again with 3 new fractured thoracic vertebrae. It has been suggested to undergo surgery again with kyphoplasty. In looking at the rest of my spine it is riddled with lesions. Does anyone have experience in any alternate procedures that should be reviewed or information on kyphoplasty concerns? I am on Zometa IV monthly & Revlamid 10mg maintenance. I am hoping there is hope & progress for bone lesions.

Hello all If anyone is self administering velcade rather than visiting hospitals, please could you advice the storage technique for it? I am a little worried about it as I am not sure whether they should be refrigerated or not? Also it is summer time in India, 35-40 degrees are very common. Many thanks

Hello everyone I am just trying to understand any timeline for monoclonal protein to reach 0 or anything that should be kept in mind to know the efficacy of the treatment plan for newly diagnosed Multiple myeloma. My father's M protein came down from 2.85- 0.7 in 2.5 cycles so far. Should I consider this to be a good progress? Many thanks

Hello everyone, a few months ago I shared my mom’s situation, she was having a tough time in the hospital, she went through ICU and after a long process she’s finally back home. Her new treatment is KRD and her monoclonal protein went from 2.8 to 0.7 which is very good. She has been really well but recently like 3 days ago she started to have a hard pain in her buttock, but it is really intense and she feels like it’s in her bone. Has anyone had something related o maybe has an idea of it can be related to the chemotherapy?

I have smoldering IgG kappa light chain and I'm wondering if anyone has done anything to help keep it smoldering and not become active? I have heard that taking Curcumin 4 grams a day is helpful and a plant based diet is helpful. I have also read that EES therapy helps. What have those who have been successful at keeping your status as smoldering done? My heme onc hasn't recommended anything but I want to do as much as I can to keep it smoldering if possible. Any advice?