I've been on Darzalex Faspro/Revlimid/Dexemetesone for almost 2 years now. One year in we lowered the Rev dose from 25mg to 10mg. Myeloma numbers have continued to look good, so we are considering stopping the Rev altogether at the 2 year mark in April 2023. We will continue with the Darzalex shots and blood tests once a month and see what happens. Anybody have any thoughts on this?

Hello! I recently had cells collected on 02/14/23 (Happy Valentines Day!) for Car-T. I had significant joint and muscle pain the first night. Some still discomfort lingers. Did anyone else experience this? If so, did you find anything that helped alleviate your pain? I do have some trepidation regarding the Car-T treatment and side effects, so I appreciate seeing your experiences in this Connect platform.

I went through CAR-T in November 22. Spent the minimum of 10 days in hospital. I did great, no fever, CRS or neurotoxicity. Spent the remainder of 30 days in a hotel a mile away. The set up was great. The program covered some of the cost. The cell therapy Dr.’s were great, I was not part of a clinical trial, just research study. That’s the good news, the bad news is CAR-T didn’t work. 30 days after being released from cell therapy program I developed pressure and pain in my abdomen. CT-PET reveled plasmacytomas surrounding my kidneys and adrenal glands..Twice a day radiation helped get things under control. Will be starting a new Chemotherapy treatment soon.

A big thank-you to Audrey for your tireless effort to build a community for all of us. Like other support groups and the HealthTree community, It is more than a community; it is our second home!

Algorithm for Treating AL Amyloidosis

Hello Amy warriors. I ran into this article, which gives a pretty good review of AL Amyloidosis, which is especially useful for newly diagnosed fellow warriors. AL Amyloidosis for Cardiologists: Awareness, Diagnosis, and Future Prospects: JACC: CardioOncology State-of-the-Art Review https://www.jacc.org/doi/10.1016/j.jaccao.2022.08.009

I am in Halifax Nova Scotia Canada & they currently introduced Car T cell therapy for other blood cancers like Leukemia & we were told they are 6 months out for MM. I am grateful that they have it here as I expect my husband will require this. His MM, I have been told, is hard to treat. He is in partial remission right now & will be put on Revlimid & Ninlaro. The Dr. thinks this will keep him in remission for a year. I'm hoping that he'll be in remission longer than this.

I had the Stem Cell Transplant in March 2022 at MD Anderson. All is very good so far. I take Revlimid and Ninlaro for maintenance and should be finished with it in June 2023. My maintenance dose of Revlimid has been arriving late since October. Accredo was just not a good Specialty Pharmacy for me. I just changed to CVS Specialty Pharmacy. I hope I don't need CAR T-Cell. I was told at MD Anderson in December they can only get enough Car T-Cell to conduct 2 Car T-Cell therapies per month. I have thought CAR T-Cell was a miracle drug for MM. It just lacked enough trial time to be approved as a first line MM therapy. Is that wrong?

I want to try CAR T but can’t get in clinical trial’s because I’m not relapse/refractory. I’ve got active m-spike and high free light chain/ratio with no remission but no increase. They don’t know what long term treatment or active myeloma will do to my body yet I don’t qualify for something that might put me in remission.

Three weeks into LUMMICAR-2 trial at Huntsman in Salt Lake City and doing well. Fortunately I have not experienced any of the expected side effects. Feel very blessed to be part of the study and praying for best results.

I have relapsed myeloma but doing well on Darzalex for now. Specialist says I’ll probably need car-t at some point. But I’m almost 76 and maybe too old. Any thoughts?

Being a myeloma fighter and survivor is like climbing a mountain. The further you go up, the steeper it gets, the air gets a little thinner. Being nonsecretory is like climbing it blindfolded. I’m honored to be sharing the climb with the members of this forum. Let’s just put one foot in front of the other. Don’t look down.

Had my CarT therapy in September 2022. The process was good and much easier on me then the 2 BMT’s I had 10 years apart. I’ve been fighting, and beating MM for 19 years! I was in remission from the CarT for 16 months, a lot less time than my BMT’s! Right now I’m in the process of finding out just how much of the MM is back. I go to the University of Iowa tomorrow for my 2nd biopsy in 2 weeks, more blood work and an MRI. A spot was found on my L14 vertebrae, so more tests are needed to see what it is exactly. My Dr has laid out 3 different possible treatments, which we’ll decide the best one for me once all the test results are back! Stay strong my fellow warriors!

I just received approval for CAR T at Stanford. I'm not sure yet what kind. I completed a stem cell transplant in December that does not seem to have worked. My PET scan shows new disease in a few areas. My bone marrow biopsy sample does not appear to be good enough to provide accurate info even though they though they had a good sample. This happened previously as well. I don't know why my bone marrow doesn't cooperate! Very much looking forward to when they can get this information out of our blood!

Had my CAR-T in June 2021. I'm still in remission as of February 2023. VERY grateful! I do receive monthly immunogloblin infusion to boost my immune system, and Zometta every 3 months. I suffer GI issues, poor balance, never ending sniffles / runny nose, and low energy, but I could not be more grateful because prior to CAR-T cell treatment, and starting at diagnosis in Fall 2017 I had received various other treatments (ie Revlimid, Velcade, Dex) and nothing worked. The last chemo treatment (Xpovio) was very rough on me, gave me no benefit so it and was discontinued after only a few weeks. Would like to hear from others about CAR-T post-treatment issues and how long did their remissions last.