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

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'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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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

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 ….

HI Colleen, I feel like we are in the thick of things- Day #7. The fevers have taken hold and the neuro beginning to set in. It is good that I am staying in a hotel close by so I can go back and forth, be close by and sneak in a nap once in a while. Greta

Good to hear from you, Greta. I'd also like to bring @raemark2010 into the conversation along with Ann.

Greta, you say that Graydon is having a rough time. What has been the biggest challenge for him? And for you? Are you able to get enough sleep?

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!

Hi Colleen, thanks for touching base. Graydon having a rough time but doing okay. On a lighter note, the dietary folks told me cheese cake won’t be on the menu anymore- I had to tell her the story about ann saying it was addictive. Fortunately it will still be available for purchase for visitors- crisis averted! LOL! Greta

Hi @greta_k, I've been thinking of you and your husband for the past few days. How are you doing?

Ann, Thanks for the good thoughts! Good to have the "intel" before we head into rougher waters. I already treated my self to the blueberry cheesecake 🙂 I hope to post again in the next couple of weeks with a good report.