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Posts (12)

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.

Tue, Jan 15 10:14am · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

CAR-T Immunotherapy is the newest treatment for some leukemias and for non-Hodgkin lymphoma. A good overview can be found on the National Cancer Institute website:


and on the Mayo Clinic page for CAR-T


Copy and paste each in your browser to find out more.

My husband had this procedure in May-June 2018. It's very rough, but it worked for him. CAR-T is, as I understand, is not a first option treatment. Before his CAR-T, my husband had exhausted every other treatment option, including R-CHOP chemotherapy (in our city) and an autologous stem cell transplant (at Mayo). But his cancer, T-Cell Rich B-Cell non-Hodgkin Lymphoma, returned, and he was considered terminal in March 2017. But CAR-T passed clinical trials and was approved as a treatment by the FDA that autumn. After CAR-T, however, he is now in remission. Not all patients are eligible for CAR-T. Luckily, my husband's cancer advanced very slowly, and he was still asymptomatic and feeling find, with no other underlying health issues (diabetes, heart disease, etc.) when we went to Mayo's for the pre-tests. A patient must undergo a battery of pre-tests to ensure he or she can withstand the serious, but temporary, neurological and other side effects and the stress the treatment inflicts on the heart, kidneys, liver, etc. My husband had these serious side effects, but none was permanent. CAR-T treatment lasts about eight weeks, including, most often, one to two weeks of in-patient hospitalization when the side effects happen (usually very shortly after the T-cells are reinfused). If the patient is not hospitalized, he or she must go to outpatient clinic every day to be monitored over the course of the treatment. To undergo the CAR-T treatment, a patient must bring along a caregiver who is willing to assist in every way possible and observe the patent–24 hours a day. (Believe me, this was needed!) When the patient returns home, there is usually a week or two of recuperation before the patient feels like returning to work for a sendentary job (like my husband's). This recuperation would be longer if your had a job that required more physical or strenuous work. Also, the patient must return to Mayo's every three months or so for follow-up PETs and blood tests for a year and more. My husband was treated at Mayo's. I can't recommend Mayo's enough. The CAR-T team–everyone from doctors, physician assistants, nurses, physical and occupational therapists, well–everybody!!–was stellar. We will never forget the wonderful people we met. They are the very best!

Dec 4, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Yes, so far so good. If you met Dave today you would never guess what he went through just six short months ago. He does have some aftereffects of the bowel surgery, but that is to be expected at this point. He sees a gastroenterologist for this. But as far as activities–he spent a few days here at home after we returned, but within a week he was working for a few hours at his office. Within two weeks he was back to work full time. His activities have been normal since then–although he can get tired every once in awhile. Like on Saturday, when he went up and down our rec room stairs into our storeroom carry all the large bins with our Christmas decorations!

Nov 26, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Hello @grandpabob! David has never mentioned any joint or muscle paint/aching or stiffness. He also was hospitalized for at least two weeks, including two stints in intensive care. But he had an unusual complication, caused by the effects of CAR-T–but not a side effect of the immunotherapy, which prompted emergency abdominal surgery. So his second stint in ICU and some of those days in the hospital were post-surgical.

Nov 15, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Greta–Wonderful news! So glad to hear you will be home for all the holidays. (We know how it is to miss them. When Dave had his autologous stem cell transplant, we were at Mayo's from November -December 29. Bummer.) I'm sure Graydon will be gaining strength every day, he just has to be a little patient and soon he will feel more like himself again. Looking forward to hearing how he is progressing.

Oct 29, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Can't help you with the menu. Dave's experience was–uh–a little different. If some of the nurses, etc. are talking about a patient who, in the middle of the CAR-T process, had a serious complication (mesenteric nodes swelling up because of CAR-T inflammation, enclosing a part of his small bowel and causing an obstruction, which perforated, and had to have 72 cm of his small bowel removed three weeks after his CAR-T infusion), well, you can guess who that was. So Dave is going through some adjustment as far as diet goes, but it has much more to do with his bowel resection than it does with the CAR-T.