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

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.

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. : )

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???

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/

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).