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CAR-T Cell Therapy: Introduce yourself and connect with others
CAR-T Cell Therapy | Last Active: Apr 11 11:12am | Replies (204)Comment receiving replies
Hello CAR-T Support Group! I thought I'd give you an update on my husband Dave, who underwent CAR-T in May-June 2018. Dave was doing very well--he was never sick, working full time since early July and living normally--right up to Christmastime, when he (and I) contracted RSV from our nearly two-year-old grandson (who was hardly sick, thank heavens). Despite our efforts, Dave's RSV progressed to viral pneumonia, and, somehow, he picked up the bacterial form as well (we ha e no idea how) and an intestinal infection (not C-Dif). His life was in danger on Jan. 3 and 4, but he pulled through. Serious viral infections can also cause the bone marrow to slow down and not produce enough red and white blood cells, and that happened to Dave after his pneumonia was getting better. He was extremely neutropenic and anemic, and his immune system had to be boosted. He spent more than three weeks in our local hospital, a regional trauma center, and Dave's Mayo hematologist was in consult with the ICU doctors, the hospitalists and our local hematologist/oncologist throughout his stay. He lost 20 pounds. We had to postpone his regular post-CAR-T checkup in mid-January, but we rescheduled it for Feb. 7 & 8 and he was well enough to go. His blood work showed that his immune system is recovering and, even better, his PET is still clear. Today he went back to work full time, but he will still be wearing his Vogmask and using vinyl gloves at work and when he is outside the house until flu season is over. Be careful everybody! We thought we were, but we were wrong. Even though you feel fine and are living as normally as possible--but if you've had CAR-T your immune system just isn't normal. We found this out the hard way.
Replies to "Hello CAR-T Support Group! I thought I'd give you an update on my husband Dave, who..."
Dave is resilient. Hope things go much smoother for you here on out. And appreciate the caution on the immune system post-CAR-T.
Hi Ann
What a horrible eye opening experience! Thanks for the heads up! Thus far Bob has avoided any illness. Our Mantra is “ Wash your hands, wash your hands, wash your hands, and don’t touch your face!” We will definitely be keeping up with that! I’m just curious was Dave on any antiviral medication? Or medication to prevent fungal pneumonia?
Ann, Thank you so much for letting us know. A good reminder that even though out of the acute stage, we all need to stay vigilant. I am so glad Dave pulled through and is doing okay now. Better yet, the PET scan in clear 🙂 Thanks for posting and keeping us informed. My husband Graydon had a partial response at the 100 day PET so we are hoping those last remaining T cells that are still circulating will gobble up the last bit. He is also having some skin reactions which I think I will start another thread about to see if anyone else has a similar problem.
Hello Ann
Thanks for the heads up. I must admit that I have had some some thought about not needing to be so careful. That thought is now gone. Glad to hear Dave is doing much better.
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Wow, Ann! You and Dave really have been to heck (not strong enough word) and back. I simply cannot imagine everything you just summed up in a paragraph. You must've been so worried. I bet the others in the group appreciate the tip of maintaining vigilance in taking care with a compromised immune system. This obviously blind-sided both of you.
I'd like to ask you to start a new discussion in the group about this. Maybe call it something like "Staying healthy after CAR-T treatment" and gather tips from members. What do you think?