Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (14)

Mon, Apr 1 7:32pm · Post CAR T cell -- rash in CAR-T Cell Therapy

Bob, Sorry for my delayed reply. Graydon has had some resolution but it seems to come and go. I feel like we got it under control now. He found the Aveeno oatmeal bath worked along with the eczema cream. I also got new detergent for sensitive skin and without dyes and scents. No dryer sheets or fabric softener either. We go for scans next week so will will let you know what the medical advice is for these flare ups. Greta

Tue, Feb 19 2:31pm · Post CAR T cell -- rash in CAR-T Cell Therapy

@raemark2010 ; @annmillercarr @grandpabob Thanks so much for the replies. It was good to know that others have had skin issues. He has been using the cortizone cream and the Avenno cream for eczema. It is keeping the itching down but we have an appointment next month so I will circle back to let you know what we learned. Not a scientific answer but I feel like the immune system is just rebooting– hopefully just the good parts and not the cancer parts! Thanks again. Greta

Mon, Feb 11 5:03pm · Post CAR T cell -- rash in CAR-T Cell Therapy

I was wondering if any patients have experienced a rash post CAR T cell? My husband is 4 post post treatment and has been starting to breakout in a red rash (itchy at time). It is not too severe and we have told our hematologist but we were just wondering if others are having any similar symptoms.

Mon, Feb 11 5:00pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Colleen, I think this would be a great thread to start. I would contribute some of our experiences ie– no food bars at all.

Mon, Feb 11 4:58pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Ann, Thank you so much for letting us know. A good reminder that even though out of the acute stage, we all need to stay vigilant. I am so glad Dave pulled through and is doing okay now. Better yet, the PET scan in clear 🙂 Thanks for posting and keeping us informed. My husband Graydon had a partial response at the 100 day PET so we are hoping those last remaining T cells that are still circulating will gobble up the last bit. He is also having some skin reactions which I think I will start another thread about to see if anyone else has a similar problem.

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 · CAR-T cell Therapy: 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