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

Posted by @colleenyoung, Mon, Sep 17 2:34pm

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?

REPLY

My name is Ann. My husband David was a CAR-T patent at Mayo's-Rochester in May-June 2018. I would be glad to discuss the CAR-T experience with any prospective Mayo Clinic CAR-T patients or caregivers.

@annmillercarr

My name is Ann. My husband David was a CAR-T patent at Mayo's-Rochester in May-June 2018. I would be glad to discuss the CAR-T experience with any prospective Mayo Clinic CAR-T patients or caregivers.

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Hi @annmillercarr, welcome to Connect. What was your husband treated for? How is he doing now?

I'm Mark from Iowa. But normally we live in West Africa. We were medically evacuated October '17 when diagnosed with non-Hodgkin lymphoma. We were blessed to go to Mayo Clinic immediately. I had the "Double Hit" type; 2 different regimens of chemo didn't work. Bleak! Thankfully, though, I qualified for CAR-T! T cells were re-infused April 17, '18. Side effects severe, in the hospital for 10 days; virtually no memory of 1 week! Latest PET scan: no cancer. Yes, worth it! Wife best caregiver ever!

Hi! My name is Rae and my husband Mark and I have spent most of our adult lives living and working in west Africa. Last October he was diagnosed there with non-Hodgkin lymphoma and we were evacuated to Mayo in Rochester. After two types of chemo didn't work he qualified for CAR-T therapy in the spring of 2018. It was pretty rough sledding for a week or so, but we had been warned and our wonderful care team got us through it, so it's all good! : ) His first two PET scans were negative. The next one is next month and I'm trying to not dread it and just trust God to take care of us day by day. And I'm trying to remember that each day is already a bonus. Trying is the operative word. : )

@colleenyoung

Hi @annmillercarr, welcome to Connect. What was your husband treated for? How is he doing now?

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He has T-cell rich B-cell non-Hodgkin lymphoma. He's feeling fine and has been working full time since the second week in July.

Ann, I find it interesting that your husband has been back to full-time work since the second week of July. My husband, also, just COULD NOT WAIT to get "back in the saddle". He'd actually been advised to take it easy for a few more weeks after we moved back to Iowa, but it just wasn't going to happen that way! I guess after being "imprisoned" by illness for a number of months, I shouldn't have been surprised that he was pretty desperate to have some normality.

Welcome Mark and Rae!

@raemark, can you talk a bit about the time between discovering that the other treatment options didn't work, finding out about CAR-T and waiting to hear if you qualified? What was it like? What tests and procedures did you go through? I'm sure people considering CAR-T would like to hear what they might expect.

@raemark2010, that sure is a lot to absorb over the past year. I suspect as a caregiver you've just been in "drive" mode. You do what has to get done and care for your husband the best that you can. Now that treatment is over and 2 PET scans have come back negative, are you reeling, resting, emotional, all of the above? How are you adjusting to the new normal and taking time for yourself? Or are you?

I want to know if carT cells can be used on colon cancer that has spread to your lung???

@genola

I want to know if carT cells can be used on colon cancer that has spread to your lung???

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Hi @genola and welcome to Connect. A recent early-phase study has shown promise using CAR-T cell therapy in the treatment of metastatic colon cancer. You can read more about the promising results here:

CAR T-cell Therapy Seen to Treat Metastatic Colorectal Cancer in Mouse Study https://immuno-oncologynews.com/2018/05/16/humanized-car-t-immunotherapy-treats-metastatic-colorectal-cancer-in-mice-study/

It is important to note that this is a very early stage study done on mice. It has not yet been tested on humans. At this time CAR-T cell therapy is not yet used for colon cancer. There are other immunotherapies that have proven effective in the treatment of colon cancer, such as Pembrolizumab (Keytruda) and nivolumab (Opdivo) Ipilimumab (Yervoy).

Genola, I invite you to +Follow the Colorectal Cancer group here: https://connect.mayoclinic.org/group/colorectal-cancer/ where you'll meet others with colon cancer and talking about treatment options. Here are a few discussions you may wish to join:
– Immunotherapy – Keytruda for colorectal cancer https://connect.mayoclinic.org/discussion/immunotherapy-keytryda/
– Reoccurrence of colon cancer https://connect.mayoclinic.org/discussion/reoccurrence-of-colon-cancer/
– Have you had TACE or SirSpheres radiation treatment? Please share https://connect.mayoclinic.org/discussion/does-anyone-have-experience-with-receiving-tace-or-sirspheres-which-are-2/

@raemark2010

Ann, I find it interesting that your husband has been back to full-time work since the second week of July. My husband, also, just COULD NOT WAIT to get "back in the saddle". He'd actually been advised to take it easy for a few more weeks after we moved back to Iowa, but it just wasn't going to happen that way! I guess after being "imprisoned" by illness for a number of months, I shouldn't have been surprised that he was pretty desperate to have some normality.

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Dave was also advised to "take it easy". I knew he really wouldn't. We got home midweek the last week in June. He went to work for a few hours that weekend (he's a sales manager at a broadcasting company–five TV stations, including the ABC and CW affiliates), so he was alone in his office. Through the 4th of July he continued to go to work part-time, and by the second week in July he was full time. As we were at Mayo's for essentially two months for his immunotherapy, all he could think about is how much he'd need to do when he got back. He was checking his emails for at least the last two weeks we were in Rochester. It was more stressful for him for the very few days he was home to think about the work piling up that it was to go into work and do something about it. I wished I could have convinced him to stay home a while longer to recuperate, but then I got to thinking…if the situation were reversed, would I be resting, or would I be up running around the house cleaning, cooking, doing laundry, etc? myself. Or would he be doing it for me. LOL!! (BTW, I am 12 years older than he, so I've been retired for a couple of years).

Hello fellow CAR-T patients and caregivers,

My name is Greta. My husband and I are from Michigan and getting ready for CAR T cell therapy. Colleen gave us a great introduction to the Mayo Connect last week. We are grateful for any support, knowledge, and/or advice you can give us prior to his T cell infusion next week. The wonderful team here at Mayo has given us a lot of information before we start this critical phase in the process but it would be great to have your patient/caregiver perspective. Thanks in advance for any advice you can provide.

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.

@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

@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….

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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