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Fri, Oct 11 8:17pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Yes, he has regular monthly blood tests. He had one at Mayo's last week, of course. Dave sees his new hem/onc in our new town at the end of the month for the first time and will have another lab then. Our former town was about 1.5 hours closer to Mayo's than our present home. But driving doesn't bother us and it is still a driveable distance for us.

Fri, Oct 11 2:26pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

Thu, Jul 4 11:42am · Delayed pain after bone marrow biopsy?? in Blood Cancers & Disorders

Dave has had three bone marrow biopsies, but only had slight pain on the days he had them–nothing afterwards.

Sat, Jun 22 10:56am · 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.

Sat, Jun 22 7:09am · 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.

Thu, Jun 20 6:11pm · 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?

Thu, Jun 20 4:58pm · 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?