CAR-T Cell Therapy: Introduce yourself and connect with others

I'm Mark in Iowa. I was infused on Apr 17, 2017 and was admitted the next day to the hospital. Neurotoxity put me in ICU for a couple days, hospital total 10 days. I remember very little for a week of the time. I found out I at times was yelling, trying to get out of bed (restrained by up to 6 nurses), couldn't talk, etc. We certainly hope that Graydon doesn't have neuro to the same degree. Will be praying for you both ….

Mark, Thanks so much for the good thoughts and prayers. Graydon is experiencing the neurotoxicity as well. Grade II they called it. I am holding on to the hope that the T -cells are working. Although not a scientific correlation between side effects and outcome, it does give me hope knowing that other patients have experienced these side effects and progressed to a scan free of disease. I think that is what is keeping us going psychologically. Thanks for the note and for taking the time to weigh in. Greta

Hi Greta! I'm Mark's wife. We've been traveling and only just saw your post. I hope your husband is doing better by now. For Mark the two-month ban on driving was almost worse than being in the hospital. : ) Now, looking back, he totally understands it and is glad he was restricted for a while. He says that even now he can tell he's not 100%. Things that used to be automatic when he drove, he has to think about them now. It's a long road but so much better than any other options! Hang in there and take care of yourself! Rae
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Rae,
Thanks for thinking of us. I know Graydon will have a hard time with the driving--- mostly because I am a really slow driver and it makes Graydon crazy 🙂 Graydon is on Day #23 post transfusion. While the CRS symptoms and neurotoxicity have subsided he continues to have trouble maintaining his blood levels. He has been getting blood and platelets the last several days. I have met some other patients and caregivers while on 73/74. I have urged them to join to join Mayo connect and read the advice that has been posted. It has been very helpful to me. I was jokingly telling another caregiver that we should make an “unofficial CAR T guide for caregivers” including some tips like the blueberry cheesecake and ‘recipes’ you can make from the nutrition area- such as coffee mocha (coffee, ice cream and hot chocolate) for those long days. Speaking of food, Graydon is getting his appetite back. If you or anyone reading this can suggest any foods/meals that were nourishing and tasty during this time, I would appreciate it. Thanks, Greta

Hi Greta! I don't have any slam dunk recommendations on good foods post CAR-T. Mark wanted to get away from refined sugar as much as possible. I was afraid he wouldn't gain his weight back, but he did just trying to "eat healthy". I try to get plenty of veggies and fruit, not much in the way of red meat (well, okay once in a while) but quite a lot of chicken and tuna at least once per week. Oh, yes, he snacks on various nuts You'll notice that word "trying" in my third sentence. I don't have this one nailed down. We are definitely a work in progress. I hope Grayson continues to feel better!

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.

I wanted to give you all a day #45 update. Although Graydon is 25lbs lighter and weak, his counts are stable enough to be “discharged” from the Mayo . We are overwhelmed with gratitude and grateful we will be home for Thanksgiving. Dr. Ansell yesterday he said the PET scan and bone marrow biopsy results are encouraging. He thinks Graydon’s lag in bouncing back is due to the accumulated impact of chemotherapy/radiation he has endured over the last 3 years. Dr. Ansell described the situation in terms of a football analogy—“it is like you have just caught a Hail Mary pass in the end zone—you made the touchdown, but you got piled on and the wind kicked out of you.” So we need to regroup, enjoy the holidays, and be grateful that we have gotten to this point. Thanks to each of you for the help and advice you have given us through the Mayo Connect portal. We have greatly appreciated it. Hope we can continue to add to the CAR T community with our experience. Special thanks to @annmillercarr, @raemark2010 , @colleenyoung

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.

That is indeed great news! Thanks for letting us know! Wow, what a road you've been on. Prayers for you continue ….. Mark & Rae

Hello, my name is Valerie and my mother, Phyllis (age 61), will infuse her CAR-T cells on 2/11. We are from Des Moines, Iowa. She was diagnosed with Diffuse Large B Cell Lymphoma in September 2018. She went through two rounds of R-CHOP and R-ICE and one round of GemOx but the cancer continued to progress very rapidly. I will serve as her caregiver along with my two sisters, Venessa and Vania. Interested to hear others stories and advice for us.