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?

@annmillercarr

Hello CAR-T Support Group! I thought I'd give you an update on my husband Dave, who underwent CAR-T in May-June 2018. Dave was doing very well–he was never sick, working full time since early July and living normally–right up to Christmastime, when he (and I) contracted RSV from our nearly two-year-old grandson (who was hardly sick, thank heavens). Despite our efforts, Dave's RSV progressed to viral pneumonia, and, somehow, he picked up the bacterial form as well (we ha e no idea how) and an intestinal infection (not C-Dif). His life was in danger on Jan. 3 and 4, but he pulled through. Serious viral infections can also cause the bone marrow to slow down and not produce enough red and white blood cells, and that happened to Dave after his pneumonia was getting better. He was extremely neutropenic and anemic, and his immune system had to be boosted. He spent more than three weeks in our local hospital, a regional trauma center, and Dave's Mayo hematologist was in consult with the ICU doctors, the hospitalists and our local hematologist/oncologist throughout his stay. He lost 20 pounds. We had to postpone his regular post-CAR-T checkup in mid-January, but we rescheduled it for Feb. 7 & 8 and he was well enough to go. His blood work showed that his immune system is recovering and, even better, his PET is still clear. Today he went back to work full time, but he will still be wearing his Vogmask and using vinyl gloves at work and when he is outside the house until flu season is over. Be careful everybody! We thought we were, but we were wrong. Even though you feel fine and are living as normally as possible–but if you've had CAR-T your immune system just isn't normal. We found this out the hard way.

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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.

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@colleenyoung

Wow, Ann! You and Dave really have been to heck (not strong enough word) and back. I simply cannot imagine everything you just summed up in a paragraph. You must've been so worried. I bet the others in the group appreciate the tip of maintaining vigilance in taking care with a compromised immune system. This obviously blind-sided both of you.

I'd like to ask you to start a new discussion in the group about this. Maybe call it something like "Staying healthy after CAR-T treatment" and gather tips from members. What do you think?

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

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@annmillercarr

Hello CAR-T Support Group! I thought I'd give you an update on my husband Dave, who underwent CAR-T in May-June 2018. Dave was doing very well–he was never sick, working full time since early July and living normally–right up to Christmastime, when he (and I) contracted RSV from our nearly two-year-old grandson (who was hardly sick, thank heavens). Despite our efforts, Dave's RSV progressed to viral pneumonia, and, somehow, he picked up the bacterial form as well (we ha e no idea how) and an intestinal infection (not C-Dif). His life was in danger on Jan. 3 and 4, but he pulled through. Serious viral infections can also cause the bone marrow to slow down and not produce enough red and white blood cells, and that happened to Dave after his pneumonia was getting better. He was extremely neutropenic and anemic, and his immune system had to be boosted. He spent more than three weeks in our local hospital, a regional trauma center, and Dave's Mayo hematologist was in consult with the ICU doctors, the hospitalists and our local hematologist/oncologist throughout his stay. He lost 20 pounds. We had to postpone his regular post-CAR-T checkup in mid-January, but we rescheduled it for Feb. 7 & 8 and he was well enough to go. His blood work showed that his immune system is recovering and, even better, his PET is still clear. Today he went back to work full time, but he will still be wearing his Vogmask and using vinyl gloves at work and when he is outside the house until flu season is over. Be careful everybody! We thought we were, but we were wrong. Even though you feel fine and are living as normally as possible–but if you've had CAR-T your immune system just isn't normal. We found this out the hard way.

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Hello Ann
Thanks for the heads up. I must admit that I have had some some thought about not needing to be so careful. That thought is now gone. Glad to hear Dave is doing much better.

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@colleenyoung

Wow, Ann! You and Dave really have been to heck (not strong enough word) and back. I simply cannot imagine everything you just summed up in a paragraph. You must've been so worried. I bet the others in the group appreciate the tip of maintaining vigilance in taking care with a compromised immune system. This obviously blind-sided both of you.

I'd like to ask you to start a new discussion in the group about this. Maybe call it something like "Staying healthy after CAR-T treatment" and gather tips from members. What do you think?

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Here’s how to start a discussion.

1. Go to the CAR-T Cell Therapy group page https://connect.mayoclinic.org/group/car-t-cell-therapy/
2. Click START A DISCUSSION
3. Add a title. For example "Staying healthy after CAR-T treatment" (Use your preferred words)
4. Write the message and click CREATE DISCUSSION.

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@grannybrenda

Hi Ann
What a horrible eye opening experience! Thanks for the heads up! Thus far Bob has avoided any illness. Our Mantra is “ Wash your hands, wash your hands, wash your hands, and don’t touch your face!” We will definitely be keeping up with that! I’m just curious was Dave on any antiviral medication? Or medication to prevent fungal pneumonia?

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Dave did not have fungal pneumonia. He had an RSV infection which progressed into viral pnuemonia. He also contracted bacterial pneumonia as well. He got both despite religiously taking his BACTRA (antibiotic) and Acyclvir (antiviral), constant handwashing and using hand sanitizer. I guess being around a 20-month old with a slight runny nose and a little cough was our downfall. We both got the RSV pretty badly, and Dave just couldn't fight it off. From now on, we both wear masks when we see our grandson (he's our only grandchild–so far!). We hope we don't scare him. (He lives about 3 hours from us, so we don't see him every day.) Dave, who returned to work today, is wearing his Vogmask and vinyl gloves when he is outside our house. I am wearing a mask and gloves too–at least until flu season is over.

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@annmillercarr

Dave did not have fungal pneumonia. He had an RSV infection which progressed into viral pnuemonia. He also contracted bacterial pneumonia as well. He got both despite religiously taking his BACTRA (antibiotic) and Acyclvir (antiviral), constant handwashing and using hand sanitizer. I guess being around a 20-month old with a slight runny nose and a little cough was our downfall. We both got the RSV pretty badly, and Dave just couldn't fight it off. From now on, we both wear masks when we see our grandson (he's our only grandchild–so far!). We hope we don't scare him. (He lives about 3 hours from us, so we don't see him every day.) Dave, who returned to work today, is wearing his Vogmask and vinyl gloves when he is outside our house. I am wearing a mask and gloves too–at least until flu season is over.

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I am glad everything turned out okay. Yikes! We love our grandchildren and want to spend time with them.
I thank you for your update. To remind us to always be on guard. Sometimes I think I’m paranoid about the germs. This reminds me to stay vigilant.

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Has CAR-T therapy been used for metastatic triple negative breast cancer? Any trials at Mayo for m TNBC

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Hello all,

My name is Krista, and my husband Ryan has had his T-cells harvested, awaiting infusion until pancreatitis/liver function improves. We are approaching the one-year mark since diagnosis, and it seems as though there is always something unexpected around the corner.

We have 2 young kids at home, and a number of friends who will be sharing caregiving duties for Ryan during treatment. We have learned through other hospitalizations that the kids need me more than he does! We also have grandparents and others who will stay with them when I need/want to be with Ryan.

I’m particularly interested in hearing from anyone with children who has done CAR-T, as well as those who have had multiple caregivers. Our plan is to stay at the Gift of Life Transplant House. Can anyone share from experience there?

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Hi Krista, and welcome. As you prepare for your husband's CAR-T treatment, I can imagine you have several questions regarding the needs of your young children, managing multiple caregivers, etc. I'm tagging @valerie912. Judging by her profile picture, I think she's been in your shoes. Also @grannybrenda and @grandpabob may be able to provide insights as dedicated grandparents.

Past Gift of Life House residents @jerrydrennan @rosemarya and @jodeej can help answer your questions about staying at the GoL House in Rochester. And this article may help answer commonly asked questions:

* Transplant Hospitality Houses – A Home Away From Home https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

Krista, will your children travel with you or stay at home with their grandparents?

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@colleenyoung

Hi Krista, and welcome. As you prepare for your husband's CAR-T treatment, I can imagine you have several questions regarding the needs of your young children, managing multiple caregivers, etc. I'm tagging @valerie912. Judging by her profile picture, I think she's been in your shoes. Also @grannybrenda and @grandpabob may be able to provide insights as dedicated grandparents.

Past Gift of Life House residents @jerrydrennan @rosemarya and @jodeej can help answer your questions about staying at the GoL House in Rochester. And this article may help answer commonly asked questions:

* Transplant Hospitality Houses – A Home Away From Home https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

Krista, will your children travel with you or stay at home with their grandparents?

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Hello Krista, My name is Bob, i had Car T therapy last August. We stayed at GOL on several occasions. We found it to be beneficial with its close proximity to the clinic. We found the advantage of being able to use the amenities within the facility when we wanted to be very practical. The social aspect was vey helpfull as well. I felt haveing others around me in similar circumstances to be beneficial. People understood what was transpiring around us. The clients and staff were always courteous and treated everyone with dignity. In preparing for Car-T we were advised to have two care givers at all times. This turned out to be great advise as one was not enough at times. Insure your freinds are totally commited to caregiving. (no disrespect intended to anyone) We did not have the added complexity of having to care for young children simultaneously. Feel free to reach out if you feel I could provide more insight.

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@colleenyoung

Hi Krista, and welcome. As you prepare for your husband's CAR-T treatment, I can imagine you have several questions regarding the needs of your young children, managing multiple caregivers, etc. I'm tagging @valerie912. Judging by her profile picture, I think she's been in your shoes. Also @grannybrenda and @grandpabob may be able to provide insights as dedicated grandparents.

Past Gift of Life House residents @jerrydrennan @rosemarya and @jodeej can help answer your questions about staying at the GoL House in Rochester. And this article may help answer commonly asked questions:

* Transplant Hospitality Houses – A Home Away From Home https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/

Krista, will your children travel with you or stay at home with their grandparents?

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Hi Krista.
I am Brenda and was Bob’s main caregiver. First let me say welcome to the CAR-T family. Sorry that you are having to be here, but we were very thankful to get the opportunity! It is a whirlwind and I cannot imagine doing it with young children. I can only share my experience as a care giver and not all are the same. I am very grateful I had people to relieve me and give me a break and to help at the GOL. When we were told to be with him 24-7. We did, and both neurotoxicity events came on during sleep. I was very grateful I was there. Nurses are fantastic but they cannot be there every minute. Lots of time it just involves watching them sleep. In our case that was important. Wifi is great at the Mayo.
We wish you, your family and extended family all the best! As a granny I’m glad you have grandparents to be with the children so you can be with your husband if he needs you.

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@marinak

Has CAR-T therapy been used for metastatic triple negative breast cancer? Any trials at Mayo for m TNBC

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Hi @marinak
I found this article
– CAR-T Trial for Triple-Negative Breast Cancer Under Way https://www.cancertherapyadvisor.com/home/news/conference-coverage/san-antonio-breast-cancer-symposium-sabcs/sabcs-2018/car-t-trial-for-triple-negative-breast-cancer-under-way/

Trials for CAR-T for TNBC are in early phases (phase 1) as yet.

Here is a recent article about promising research at Mayo Clinic for TNBC:
– Mayo researchers identify potential new treatment for subset of women with triple-negative breast cancer https://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-potential-new-treatment-for-subset-of-women-with-triple-negative-breast-cancer/

You can find more clinical trials being conducted currently at Mayo Clinic for triple negative breast cancer here: https://www.mayo.edu/research/clinical-trials/search-results?keyword=triple%20negative%20breast%20cancer

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