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.

Hello everyone! It’s been a minute since I posted anything. Also, the app asked for ethnicity. I am white but my husband, the patient is African American. He was diagnosed with Multiple Myeloma in July of last year. He started chemo Revlamid, darzalex, and Velcade in September 2025. After about 3 weeks in on the chemo he had an episode where he got up to go to the bathroom and I heard a loud crash in the bathroom. He had fallen off the toilet and was laying face down in the corner making a horribly loud snoring-like sound. I lifted his shoulder and his eyes were bugged out and mouth wide open. I really thought he had a stroke. Called 911 and paramedics came and attributed it to him getting up too fast and called it a vaso vagal episode. He had about 3 more just like this. Always after he has been laying down. Well, since he kept having them his oncologist/hematologist put him on seizure meds (Keppra). It seemed that worked and he was not having them. Well, his hematologist/oncologist who he was referred to at Emory University Hospital had finally felt he was strong enough to go thru with his stem cell transplant. He was admitted for about 2 and a half weeks and then he wanted us to stay nearby at the campus Hope Lodge. It is a free lodge for cancer patients and their family member. He really didn’t eat anything the whole time in the hospital and so he was receiving TPN (IV nutrition). Five days after getting out of the hospital he had a seizure and he was breathing so erratic. So I called the nurses line and asked for advice. They said to call 911 and get them to bring him to the ER. After they gave him fluids and some fluconozole for the thrush in his mouth and throat, they said for a transplant patient all of his labs look great. His counts were all coming up and looking good. But that I was just going to have to try different things to get his taste buds stimulated so that they come back and his taste comes back. So I was ok. He did perk up and I felt if the doctor felt safe releasing him then it was ok. We went into see the doc on the following Wednesday and was told we could go home as long as our oncologist would approve us going in daily to receive fluids. He did and my husband received them but he still is not eating much. The next night, he asked me to help him to the bathroom and when I did, I was trying to turn his back to the toilet, I felt his leg buckle and I knew he was going into a seizure. It was one of the shorter ones because it only lasted 5-7 minutes. However, it doesn’t scare me any less. I guess the doctor from the Emory ER ran so many tests but all that he ordered that would help them see if there was seizure activity were all negative so she is telling me she believe they’re not seizures but having to do with his BP. But if that is it. Where does he go? My husband is completely gone for anywhere from 5 mins to 20 mins. He is staring straight at me but he is not alert or responsive at all. I know this was a very long question but I wanted to explain everything to see if any other persons have had this happen to them or anything similar? I’m open to hear whatever advice or whatever questions you have for me.