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

Posted by Colleen Young @colleenyoung, Sep 17, 2018

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?

@annmillercarr

Greta–My husband underwent CAR-T immunotherapy in May-June 2018. I can tell you this much:

Make sure you have all your living accommodations set. You will be in Rochester for at least six or seven weeks, possibly longer.
Be prepared for anything to happen. This CAR-T is rough. Really rough. The side effects can happen right away–within 24 hours. My husband was in the ICU for days. One night three days following infusion, his fever was 105.4 and his heart rate 180. There is a reason why all those pre-tests were necessary. The neurological effects are rough too. The CAR-T team will put your husband through a battery of questions and simple tests several times every day. One time you husband will do pretty well. The next time, he can regress. Sometimes it's two steps forward and one step back. Other times it will seem like one step forward and two steps back. And my husband didn't have as serious a time with the neurological effects as another poster did. Have you ever been around someone with a bad head injury/concussion? I mean a really bad one. My sister had one in an auto accident in 1996 and I helped care for her (she recovered with only a couple of minor aftereffects). But the neurotoxic effects for my husband were very similar to the concussive injury my sis had. When asked during his several-times-a-day tests the team gives, your husband may not know what city he is in, and may not rememberr what he had for breakfast a half hour ago. He won't be able to draw the simplest of figures–like a hexagon. His handwriting will be affected and it will be an indecipherable scribble. His balance and ability to walk by himself will be affected–he will be taking walks with the nurses and will have to have support–a walker and a nurse waling with with him at all times. He will have some physical therapy. All this is normal. This can go on for days. But all these effects are temporary. My hubby's were gone by the time we went home. The doctors, PAs, nurses–well, everyone on the CAR-T team and on Eiseniberg 7-3 and 7-4 is stellar. They will pay very, very close attention to your husband. You, too, will be a critical part of his recovery. When they tell you that you will need to be with him 24 hours a day–they aren't kidding. You will need to be on alert for any changes in his behavior or cognition, especially when he is an outpatient. As for the outpatient clinic on 7-4, sometimes you can be there for hours–especially if your husband will need infusions of fluids, potatssium, etc. Also–one more thing–stay away from the Eisenberg cafeteria cheesecake. It's addictive. Especially with the blueberries on it. You will find yourself craving it after just one piece. You have been warned.

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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

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@greta_k

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

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Good luck! We will be thinking about you! Also, you can order the cheesecake from the inpatient menu–that is, if you fail to heed my warning. My husband says most of the dishes he tried on the menu were good. If you are an inpatient for a while, hunt down the dietician on floor 7. Her office is very near 7-3 and 7-4. She has a super-secret menu. Shhhhhhh….

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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.

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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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