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

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

Nov 14, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Hi Bob, my husband Graydon had the CAR T infusion on the 2nd of October so only 45 days out but he has had considerable bone and joint pain. I asked him if he thought it was Chemo or CAR T relat d and he thinks probably a combination of both for him. He has had a lot of accumulated chemo and radiation over the last 3 years. That is one reason why he may not recovering as quickly as some of the other patients. So sorry we didn’t have a good answer to your concern but know that you are not alone in your symptoms. Maybe as more patients go through the treatment more info will become available. Glad to know you are doing very well otherwise. We hope for the same. Greta

Oct 25, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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

Oct 11, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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

Oct 9, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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

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

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

Oct 3, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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.

Sep 30, 2018 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Ann, Thank you so much for this advice and your prompt reply. We are just 2 days away from the infusion so this information will help me and My family to be more prepared. I also appreciated your levity — the cheesecake may be too hard to resist on some of those tough days ahead. I will have to get a piece in your honor 🙂 Thanks again for your thoughtful response. We sincerely appreciated it. Greta