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?

@valerie912

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.

Jump to this post

Hello Valerie,
I went through what seems virtually them same last year at age 62. I had Car T infusion August 1st.
Our take away is to believe what the doctors and staff tell you. I experienced all of the side effects they outlined. After day 2, I spent 2 weeks in the hospital, one week in intensive care. I remember virtually nothing of those weeks. Your mom will require all the care and support you and your sisters can provide. The therapy took a lot out of me. I was so thankful to have the family support I had. The doctors and staff at Mayo were extremely supportive as well. Never be afraid to call back to the station if you feel something is off. My wife feels it was important that she stayed with me 24-7 while I was in the hospital. Be patient, recovery took some time. I felt cold all the time for at least 2 months after the infusion. I experienced a lot of joint pain for at least four months. I found it difficult to eat for a long period of time. Nearly six months later. I can happily say I am doing quite well physically, I am taking long walks and am even back into participating in light sports. It was tough but so worth it.
All the best wishes from me to your Mom and entire family.
Bob

REPLY
@grandpabob

Hello Valerie,
I went through what seems virtually them same last year at age 62. I had Car T infusion August 1st.
Our take away is to believe what the doctors and staff tell you. I experienced all of the side effects they outlined. After day 2, I spent 2 weeks in the hospital, one week in intensive care. I remember virtually nothing of those weeks. Your mom will require all the care and support you and your sisters can provide. The therapy took a lot out of me. I was so thankful to have the family support I had. The doctors and staff at Mayo were extremely supportive as well. Never be afraid to call back to the station if you feel something is off. My wife feels it was important that she stayed with me 24-7 while I was in the hospital. Be patient, recovery took some time. I felt cold all the time for at least 2 months after the infusion. I experienced a lot of joint pain for at least four months. I found it difficult to eat for a long period of time. Nearly six months later. I can happily say I am doing quite well physically, I am taking long walks and am even back into participating in light sports. It was tough but so worth it.
All the best wishes from me to your Mom and entire family.
Bob

Jump to this post

@grandpabob, thank you for sharing your story. I'm glad you are doing so well.

REPLY

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.

REPLY
@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.

Jump to this post

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?

REPLY
@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.

Jump to this post

Dave is resilient. Hope things go much smoother for you here on out. And appreciate the caution on the immune system post-CAR-T.

REPLY
@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.

Jump to this post

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?

REPLY
@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.

Jump to this post

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.

REPLY
@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?

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY

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

REPLY

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?

REPLY

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?

REPLY
Please login or register to post a reply.