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

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

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

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@colleenyoung

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

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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

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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!

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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?

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@colleenyoung

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?

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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

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@greta_k

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

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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 ….

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@raemark

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 ….

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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

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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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@raemark2010

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

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@greta_k

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

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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!

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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.

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@annmillercarr

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.

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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

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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.

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@greta_k

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

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

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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.

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