Hello friends,
I had planned on updating everyone much sooner, but life got in the way a bit. Last I wrote, I had received my T-cells back on June 5, 2023. The first few days were totally uneventful. I was walking the halls a lot, staying active, reading, and getting dressed in regular clothing every day trying not to feel like a patient! My neuro checks were perfect. Other than some nausea, I had no complaints. On day +3, June 8, 2023, I developed some low grade fevers and felt a little hot, but these symptoms were very mild. Over the next day or two, my fevers got higher and my fatigue was increasing along with chills and sweats. That pattern continued as my fevers were approximately 103. I was often shaking uncontrollably and had absolutely no energy. All that walking I was doing stopped. My appetite was pretty poor at this point, but I was still feeling positive and trying to take it all in stride. For the next several days, my fevers fluctuated. The shaking was controlled with IV medications. My neuro checks remained normal. I was receiving IV antibiotics, IV fluids, and supplemental oxygen but despite feeling crappy the staff kept telling me I was the healthiest patient on the unit. I had been keeping a journal during my stay and as the days were progressing my entries were getting shorter, pretty just lamenting about the fevers and fatigue and lack of appetite but still trying to maintain a positive attitude.
By June 17, 2023 (+ Day 12), my memory started to blur a bit. All I can really recall is severe bone pain in my hip and pelvic region. I remember telling the nurse I was going to vomit. I can't report what happened over the next several days, as I have only the very vaguest memories. Some of the time line was filled in for me by my husband, my kids, and the amazing staff who cared for me. I "awoke" on the evening of June 20th wondering what day it was. My bone pain was gone, my fevers were approaching normal, and more importantly I could think and speak again. It took me a day or two to feel comfortable findings my words. Finally, on June 24, 2023, 24 days after being admitted, I was discharged to home.
Is there any greater feeling than to return home to your loved ones, your pets, your own bed, and your own shower? I think not. I don't want my story to frighten anyone. Not every patient gets cytokine release syndrome and neurotoxicity. Apparently I had very exuberant T-cells and perhaps that is why I had the reaction I did. If there is anything I hope you take away from my experience, it is that science is amazing. The researchers who wrote my trial will forever be my heroes, regardless of my ultimate outcome. I am equally indebted to the amazing staff members who encouraged me and supported me every step of the way. I have been home now for 5 1/2 days. I have a lot of fatigue. I can do a few little things and then have to rest. I will be receiving physical and occupational therapy services, which should help me with endurance and strength. I am on multiple oral medications including anti-seizure medications, antivirals, and antibiotics. I will be resuming my IVIG infusions hopefully next week. I had blood work today. My hemoglobin remains low and my neutrophils are .80 (not so terrible). I am told these results are expected at this point.
In three months, I will have the all-important bone marrow biopsy. Obviously, I am hoping for a cure but only time will tell. I will remain positive as I continue to navigate the road back to wellness and strength. Whatever part of your journey you are on, please remain hopeful. At no point during the past ten years of dealing with this disease, did I think the opportunity to be patient #3 in this exciting new trial would have been offered to me. We have so much to be excited about and so much to be grateful for. Every single day brilliant individuals are working to make our lives better and to give us the opportunity to live a full and happy life. Sending each and every one of you the very best wishes for success with whatever treatment becomes available to you, and I would encourage you to participate in an appropriate clinical trial if that is a a possibility. It is an amazing feeling to be part of something that is bigger than yourself.
I will post an update after my bone marrow biopsy and maybe just to let you know how I am progressing in my recovery.
All the best,
Nan
MAJIC Trial Update
Dr Sharman provides an update on an NIH CAR-T trial for relapsed/refractory DBLC
