Not a question I just wanted to share I had my post car t pet scan, bmb, and bloodwork on the 14 and 15. Saw dr on the 23. I am in complete stringent remission

I will start Talquetamab therapy as my bridging therapy before my car-t therapy. I would like to hear from anyone who has gone through this therapy for their experiences and tips for minimize the side effects.

My name is Edward, went through the older drip method for treatment in 2024, but went off treatment for about a year at which time had a series of small strokes which were no obvious.

Hello! Please advise if the videos of health tree University still available?

Brief overview: Diagnosed with lambda light chain MM in 11/2023. Went through multiple approaches:RevDDar; LenDDex; Kipro etc: Monoclonals and proteosome inhibitors from 11/2023 to 12/2025 with high steroids; short remission (8 months). Decided to do CAR-T. CAR-T infusion on 1/22/26 (after 5 day delay treatment for cellulitis). Post CAR-T “issues” as expected: 2 weeks in Hospital; dramatic weakness; brain fog, inability to walk but during the 2 wks PT assisted ambulation with walker; then a few days in nearby hotel when fever spiked, uncontrollably shaking; 911 back to hospital for 4 weeks (more steroids! Etc); never any ICANS nor Cytokin Release Syndrome detected. Released to inpatient Rehab for 2 weeks when onset/delayed Cerebral neurotoxic symptoms appeared (eg palsy, swallowing and speech difficulties; apparently CNVII and CNV hit hardest). Back to hospital; discharged to inpatient rehab. Finally on April 1, after 2 and a half months of bouncing between hospital and rehabs, discharged to home. At first some home PT, now outpatient rehab. Two weeks ago my endocrinologist reported that I had Adrenal Insufficiency and provided info on “Stress Dosing” due to cortisol and ACTH numbers. Her instructions included when to increase prednisone (from 5mg/day to 15 mg) and prescribed EMERGENCY INSTRUCTIONS: SOLU-CORTEF INJECTION FOR ADRENAL CRISIS / STEROID DEPENDENCY! I sure didn’t expect this journey: learning to swallow again; speak well; walk without falling; working hard to think clearly; monitoring for signs of adrenal crisis and administering self injections with rush to ER, etc. I’ll be 75 yo in a few weeks, was in fair health (autoimmune rheumatoid arthritis the biggest comorbidity). Oncology: monthly IVIG, IV Pentam; daily oral meds (fungicides, virosides, etc. 28 pills/day starting at 7 am through out the day until last ones at 11pm. Yesterday I had my IVIG+IVPentam and neither my oncologist nor endocrinologist warned me this infusion could induce an adrenal crisis. NIH info warns that these in fusions with adrenal insulin should be tightly managed simply by BOTH oncologist and endocrinologist. To my knowledge this has not happened. At the Infusion clinic I mentioned this to the RN who said no instance like this came with the infusion order :-( My thinning skin too has taken a “hit” with “liver spots” from hands to shoulder. Just thought I’d share a SMALL part of my particular journey. Thanks if you have read this far! Bob

I am starting my Car-T evaluation next week and was hoping to hear from those who have had Car-T. I have to travel and be away from home for this. Car-T before biospecifics seems to be the best sequencing and the possibility of no medication sounds great but I have concerns. Long term side effects and recovery.

Hi I got ONJ of the jaw from only two injections of Zoledronic and had to stop treatment. Does anyone know of any other drug that helps with hardening the bones? Thank you Molly

I was diagnosed in 2005 with smoldering, in 2014 MM became active and treatment started. After RVD and transplant I was on rev maintenance for 8 years. No meds for the last 4 years. My question is this light chains increasing but no MM symptoms yet. What is the cut off to start treatments?

I have been with SMM for the past 5 years. I am thinking of coloring my hair, wanted to check if it is ok to color the hair? If so, can you suggest any good all natural colors?

I will be beginning Darcelex in another week. Had two wisdom teeth extracted over 5 weeks ago and had extreme post pain issues. Now having pain in an upper tooth? My dentist feels it is TMJ (which I have) and didn't see any cavity or crack? She suggested my seeing an Endodontist if I wished but didn't see any decay? Has anyone else experience TMJ issues with High Risk Smoundering Myeloma? I did have a jaw x ray which was negative for lesions.