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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.

Oct 8, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Greta–Glad to hear that your husband is hanging in there. Devastated to hear that Eisenberg took cheesecake off the menu! We must petition them to put it back on!

Oct 2, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Good luck! We will be thinking about you! Also, you can order the cheesecake from the inpatient menu–that is, if you fail to heed my warning. My husband says most of the dishes he tried on the menu were good. If you are an inpatient for a while, hunt down the dietician on floor 7. Her office is very near 7-3 and 7-4. She has a super-secret menu. Shhhhhhh….

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

Greta–My husband underwent CAR-T immunotherapy in May-June 2018. I can tell you this much:

Make sure you have all your living accommodations set. You will be in Rochester for at least six or seven weeks, possibly longer.
Be prepared for anything to happen. This CAR-T is rough. Really rough. The side effects can happen right away–within 24 hours. My husband was in the ICU for days. One night three days following infusion, his fever was 105.4 and his heart rate 180. There is a reason why all those pre-tests were necessary. The neurological effects are rough too. The CAR-T team will put your husband through a battery of questions and simple tests several times every day. One time you husband will do pretty well. The next time, he can regress. Sometimes it's two steps forward and one step back. Other times it will seem like one step forward and two steps back. And my husband didn't have as serious a time with the neurological effects as another poster did. Have you ever been around someone with a bad head injury/concussion? I mean a really bad one. My sister had one in an auto accident in 1996 and I helped care for her (she recovered with only a couple of minor aftereffects). But the neurotoxic effects for my husband were very similar to the concussive injury my sis had. When asked during his several-times-a-day tests the team gives, your husband may not know what city he is in, and may not rememberr what he had for breakfast a half hour ago. He won't be able to draw the simplest of figures–like a hexagon. His handwriting will be affected and it will be an indecipherable scribble. His balance and ability to walk by himself will be affected–he will be taking walks with the nurses and will have to have support–a walker and a nurse waling with with him at all times. He will have some physical therapy. All this is normal. This can go on for days. But all these effects are temporary. My hubby's were gone by the time we went home. The doctors, PAs, nurses–well, everyone on the CAR-T team and on Eiseniberg 7-3 and 7-4 is stellar. They will pay very, very close attention to your husband. You, too, will be a critical part of his recovery. When they tell you that you will need to be with him 24 hours a day–they aren't kidding. You will need to be on alert for any changes in his behavior or cognition, especially when he is an outpatient. As for the outpatient clinic on 7-4, sometimes you can be there for hours–especially if your husband will need infusions of fluids, potatssium, etc. Also–one more thing–stay away from the Eisenberg cafeteria cheesecake. It's addictive. Especially with the blueberries on it. You will find yourself craving it after just one piece. You have been warned.