CAR-T Cell Therapy: Introduce yourself and connect with others

Hi @ntsimpson, I can help with navigating the site. This article might help:
Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
See more tips in the Help Center https://connect.mayoclinic.org/help-center/

Along with @elwoodsdad, I'm tagging a @grandpabob @maryangelasmith @vivian808 who also have experience with CAR-T celll therapy.

@ntsimpson, are you eligible to CAR-T cell therapy? Will you be starting treatment soon?

My husband will most probably start a CAR T clinical trial in the next month. He has CLL. This will be his fourth treatment.

Good morning @beeclee
My 33 yr old son was diagnosed in July with CTCL\MF and is receiving light therapy as well. It has been very good for him. We found a dermatologist close to our home who has been such a help to my son mentally and physically. Generally we travel to NYC to Sloan but now he doesn't have to go monthly but every 3 months. Less Stress. There is so much to know and read about this disease/Lymphoma don't stress yourself out.
Enjoy life, every second of it.
I hope your light therapy treatments are going well.

Thank you for your well wishes. I have had 18 treatments (3 a week) and some of my lesions have disappeared and the rest are receding. My main complaint is fatigue but that could be age related.

Hello CAR-T patients and survivors,

I'm Sunil from Michigan. I was diagnosed with DLBCL in '23. I went through radiation and 6 cycles of R-CHOP. I rang the bell, went through IV methotrexate cycles, and after the last treatment, I was told I was in remission/cured. 6 months later, the cancer was back. My first symptom at the time was severe abdominal pain....later misdiagnosed as pancreatic cancer.
My memory of the next part is extremely hazy, but this is what my wife told me. I was approved for CAR-T. Went through counseling, chemotherapy, and radiation. T cells were harvested, modified, and infused back into me. This was done on December 18, 2023. A day later, I was in the ICU. Christmas Eve, I was put on a vent. I had a severe case of cytokine release syndrome (CRS). I had brain swelling, CMV viremia, Clostridium difficle infection...and many other symptoms etc.
After 1 month in the ICU, I was transferred to a step-down unit for a couple of weeks and finally released. I lost 40 lbs, couldn't walk, lost significant memory, and was severely depressed. For months, I had appointments with my doctor at the stem cell clinic 2x a week. Over the months, I've received blood transfusions, platelet infusions, IgG infusions, and shots to treat neutropenia. Since the beginning of the year, I've gone from not being able to walk without a walker/wheelchair to slowly walking 3 miles a day. The neuropathy and joint pain make exercising a challenge. I've started back to the gym to lift light weights, and I plan on going back to work after Labor Day. My memory regarding work is back to normal, but there are many things that I still don't recall, including all my time in the ICU and the step-down clinic. I forgot my father passed away and don't remember my children graduating from high school, college, and post-graduate programs. In the beginning, I even forgot I was married or how old my wife and children were. The months after I came home were dark days indeed.
It's been a tough journey, but I feel it was well worth it. I had a PET scan this week and see my oncologist in 2 days. If this latest PET is clear, I probably will be released from the stem cell clinic. I'm very anxious about getting the results of the PET scan and am trying to keep my mind from going down the dark path.
Thank you for allowing me to express myself.

Welcome to Connect, Sunil. What I’m going to say is clearly an understatement but wow, what incredible journey you’ve been through! There are always risks taken when we participate in medical procedures that are on the cutting edge of science and we hope for the best! I didn’t have CAR-T, but a bone marrow transplant (donor cells) which came with its own set of challenges. An acquaintance who had her transplant the same day that I had mine developed CRS similar to your story. Same day…two separate stories.
Since every person is unique we just never know how the body will tolerate the procedure, the meds or what life will be like afterwards. But when it’s our only chance for survival, the potential benefits of the procedure outweigh those risks, making the choice a little easier…but still stressful, right?
I’m happy to hear the dark days are behind you and that you’re progressing well. Scanxiety is a real thing though…when waiting for those test results! So I’m sitting here with fingers crossed for you that the PET scan tomorrow will yield only the best news!! Thank you for sharing your story and I hope you’re a regular contributor in our CAR-T support group!
Will you please let me know what you find out with your scan?

Hello,

I received very positive news from my last PET scan. There is no evidence of disease. However my oncologist wouldn't use the word "remission" yet. I'm thankful to my higher power but my excitement is tempered by the relapse I experienced last year.

That’s excellent news about your PET scan though I know what you mean about excitement being tempered. I’m not superstitious but I still won’t use the “cure” word even though typically the 5 year point post transplant is a defining marker. So the event was quietly celebrated.
Thank you for sharing your positive news!

You’ve been through some incredibly challenging times this past year. It’s a testimony to your strength and perseverance to see how far you’ve come. I’ve no doubt you’ll continue your steady recovery. You mentioned the goal of returning to work after Labor Day. Is this a demanding job? Are you ‘in training’ to endure an 8 hour day?

My husband received t cell infusion 6 days ago. He is doing well. So far, no side effects.