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Posts (17)

3 days ago · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

Really wish we could help, but it is not wise to be "practicing medicine without a license" on a forum like this. LOL! We are wishing you the best and hope you find a medical professional to answer your question soon.

3 days ago · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

Sorry–We would love to be able to help you, but this is a patient support group. We are not licensed medical professionals, and therefore are not qualified to answer your question. (And even if some of us may know the answer, we should not answer it on this forum.) Your question should be answered by a physician, specifically a hematologist/oncologist. If you are being treated for a lymphoma, you can ask your own hematologist/oncologist. Or perhaps Lisa, our moderator, can direct you to a Mayo Clinic medical professional who is qualified to answer your question.

5 days ago · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

Kevin–My husband was diagnosed in 2009 with a rare Hodgkin lymphoma, Nodular Lymphocyte Predominant, which in 20 percent of cases transforms into a B-Cell non-Hodgkin's. His did in autumn 2015 (T-Cell Rich B-Cell). The affected nodes for both were two of his mesenteric nodes on the right side of his body. He had R-CHOP, refractory R-Chop, and an autologous stem-cell transplant at Mayo's in Nov-Dec 2016. The cancer was back by his 100-day checkup in March 2017, but, for some inexplicable reason, it didn't grow as fast as usual. By the time the FDA approved his type of CAR-T (not a trial) in Nov 2017, he was completely asymptomatic and the mass was still not large enough to biopsy. When it was finally time to biopsy in March 2018, docs thought it might actually be the Hodgkin's returning! It really was acting more like that. But it was the non-Hodgkin's. That's when (YESCARTA) CAR-T was recommended. Have you considered a second opinion from Mayo's?

5 days ago · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

Thank you, Lisa.

Hello @jaler. I hope you have read my description earlier on this web. If you have, and have more questions, please ask them. Again, CAR-T is rough. But I am hear to tell you it can work. We just returned home from a checkup at Mayo's and all indications are my husband is still in complete remission 13 months after the t-cells were re-infused. He feels fine. However, he is neutropenic, mostly because of a bad case of pneumonia which developed from an RSV infection he contracted at Christmastime. He was anemic and his platelet count was down considerably also afterwards. His platelets are back to normal and he is still slightly anemic, but nothing to get worried about. Those counts have rebounded. After the pneumonia, his white blood cell count was one-tenth of normal. It is now one-half, so it's slowly coming around and the doctors say eventually it will be back in normal range. He just can't get another serious infection or illness right now.

Thu, Apr 18 8:07am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Has he discussed this with his hematologist/oncologist, either at home or at Mayo's?

Tue, Feb 12 8:17am · Post CAR T cell -- rash in CAR-T Cell Therapy

Dave had a slight rash around his neck for one-two days during CAR-T, but it disappeared and he's never had another.

Mon, Feb 11 9:20pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Dave did not have fungal pneumonia. He had an RSV infection which progressed into viral pnuemonia. He also contracted bacterial pneumonia as well. He got both despite religiously taking his BACTRA (antibiotic) and Acyclvir (antiviral), constant handwashing and using hand sanitizer. I guess being around a 20-month old with a slight runny nose and a little cough was our downfall. We both got the RSV pretty badly, and Dave just couldn't fight it off. From now on, we both wear masks when we see our grandson (he's our only grandchild–so far!). We hope we don't scare him. (He lives about 3 hours from us, so we don't see him every day.) Dave, who returned to work today, is wearing his Vogmask and vinyl gloves when he is outside our house. I am wearing a mask and gloves too–at least until flu season is over.

Mon, Feb 11 7:58am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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.