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
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You're a positive, brave, thoughtful, soul. I want to thank you so very much for participating in this trial and sharing your journey with all of us!! May you feel stronger and healthier with each passing day. Wishing you the best possible outcome with your bone marrow check too!! Hugs!!
Nan - Thank you for the post and taking part in the trial. I am learning about CAR-T therapy by reading your and other’s posts. I had no idea neurotoxicity was even a thing! I am glad to read you emerged from the fog after sometime and are home again.
Thank you so much for your update and for having the courage to be a pioneer in support of a cure. God bless you and I'm praying your journey will get easier each day and that you are feeling stronger too.
Its so interesting reading about your experience. Thankyou for doing that. You are really brave and like others I will await your results. In the meantime take it easy, Anne uk
Nan, I admire you for getting the strength and the need to update us on how you are doing...it's scary to read what you have been through, I'm relieved you are at home and I pray you continue with your recovery and that the bone marrow biopsy brings the results we all so want for you! Your family must be over the moon to have you back ❤️❤️❤️Petra
I appreciated your update. You have a great attitude and a lot of inner strength. I think CAR T holds great potential for CLL. You are paving the way for the rest of us. So glad you are home and feeling better. ❤️💪
Glad to hear that everything is going according to plan - there is nothing nicer than coming home after an illness, that you wonder in the dark recesses of your mind, if you will ever return from. 💙
I read your excellent account with sighs, grimaces, exclamations and finally a smile as you returned home to the wonderful comforts of home! You’ve been through so much and this treatment is no walk in the park. You’re right that not every patient gets cytokine release syndrome and neurotoxicity and I’m so sorry you had to endure and thankfully conquer this. Staff in these settings are so skilled and we are indebted to them. The psychological effects cannot be underestimated so take good care of yourself.
We await your BMB with everything crossed in the hope that you are able to finally say goodbye to this foe!
I am so pleased you found the energy to write such an informative post which is so helpful for everyone keeping abreast of new treatments. I know you are such a positive person and you will regain full strength in time. Sending you those positive vibes and every good wish for the result we all hope for from your BMB in a few months time.
Your journey is nothing short of amazing and I wish you much luck with your bone marrow biopsy. Thank you for sharing. Prayers for a speedy recovery 🙏😊
Wow is all that I can say to that excellently written account of your CAR-T experience. I think everyone who is following your treatment journey has been waiting for an update, I know that I sure was. So sorry that you had to endure just about every post infusion reaction there is and to such a high degree. I had my blood collected yesterday at Penn and now will wait for the date. Your posts have laid out the positive and the not as positive. Wonderful job.
You have been on my mind! Congratulations on donating your T cells. That is a huge step and I hope the process went smoothly. Please feel free to message me if you have any specific questions. Wishing you all the best. You are in very capable hands. The research team will support you every step of the way. Looking forward to following your progress.
Thank you for sharing your story. You are brave and strong and I wish you a speedy recovery and to hear the word "CURED". Blessings to you and yours who supported you on this journey.
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Day +5 Post CAR-T Infusion
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