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

Hi - this is Barb - son Greg had T cell transplant in Sept /18. Still no cancer, but he came down with shingles ion his eye and scalp. It has been pretty awful. He had his transplant at the wonderful Mayo Clinic, Rochester. Has this happened to anyone else?

I'm afraid. Afraid of my wife's upcoming CART-T treatment and my mental ability to continue as her caregiver. We've been married 57 years, and life has been wonderful --until May, 2019. That's when we got the diffuse large B-cell non-Hodgkin's diagnosis at Mayo Rochester. After six rounds of R-CHOP, things looked promising-- except for one sub-centimeter apparent spot. 21 day wait, then another PET scan. The NHL had "exploded" and was almost back to it's original diffusion. On to R-ICE. 3 rounds. Still there. Then another 3 rounds of something else with a name that takes up about half the dictionary. The plan was that round would knock the lymphoma down enough that she'd have a stem cell transplant. In getting ready for the transplant, she passed all the tests. But the lymphoma was still strong so the only decision was to do CAR-T. To keep the lymphoma in check before the start of CAR-T in two weeks, she went through another 3 rounds of another chemo. It's absolutely amazing how she's taken all of this, both physically and mentally. She's excited for the CAR-T to get underway, and so am I. But I'm afraid. I'm afraid of it not working and losing her. I'm afraid of what she'll have to go through. I'm afraid of my ability to stay strong for her as she goes through the side effects. As a caregiver, I'm worn out. Frankly, it's been a tough 11 months. I find it difficult to keep smiling and appearing to be happy while doing everything that needs to be done in this situation. I feel trapped in the house with no where to go except to Mayo 3-4 days a week. Food has no attraction to her, so going out is not a real possibility. Please let me know how those of you who "have been there, done that" made it through this tough time. (and we moved to a home in the country outside a small town a few years ago, so it has been difficult to break into the established relationships -- and my two closest friends need help too--- one just had a double kidney transplant and the other is fighting cancer.)

Hello @ruttgerbay, welcome to Mayo Clinic Connect. Within Mayo Connect there is a group labeled “Caregivers” you may want to follow that group and ask your questions there as well. https://connect.mayoclinic.org/group/caregivers/

As one who has received Car-T treatment, I can understand how trying being a caregiver can be. As with your wife, I had three different treatments with little result before I was approved for Car-T. This brought along with it equal amounts of stress and uncertainty for my wife and family who took great care of me throughout. I know a large part of how she managed was with the support of our family and friends, we did not hesitate to engage them or accept their help when offers were made.

I assume the care team at Mayo Clinic reviewed the possible side effects, take these seriously, as I myself had most all of them. Be prepared for that.

Another bit of advice that was provided and we thankfully heeded, was to have two caregivers available. Our sons looked after their mother while she looked after me with their help.

I realize you recently moved, however, do you have some family or friends for support that can help you once your wife goes in for treatment?

Has your wife already had the Aphaeresis to collect her T-Cells?

Do keep in touch and I encourage you to engage the “Caregivers” on Mayo Connect.

Thank you for the encouragement! After the failed chemo treatments and the resulting "kicks in the gut," it was nice to hear from someone who has been through the same scenario as my wife. Frankly, while I have a somewhat positive outlook, past experience has set me up for another failure...but I DO have hope. You've made that hope a lot stronger. We are fortunate that our two sons live about 1.5 hours away and are already providing great support for my wife --and me. Our daughter will be flying to MN from TX (if internal flights are still taking place) to stay in the Gift of Life House in Rochester with her mom immediately after the infusion and and our boys will be coming to give her some daytimes out of the house. I'll be staying with her until our daughter arrives, and as necessary as other close friends come to be the live-in caregiver. I'll also be doing the shopping, cooking etc. to take some of the burden off the live-ins. In other words, we do have a solid support system. And yes, her T Cells are now visiting the lab in California and are getting zapped or whatever they do to them to get them ready for the infusion. Mayo has gone over all the possible side effects and risks, and I mean ALL... several times.
Thank you for giving me a little more faith in miracles.

Hi - this is Barb again with an update on my son, Greg. His shingles are gone, thanks to very heavy doses of Valacyovir which was given in the hospital by an intervenious drip. They did this for a week. That was Jan 28th. Our Dr in Winnipeg was in contact with the wonderful Dr Lin at the Mayo Clinic, Rochester during this time.
Greg has a lot of nerve pain, even now in his head. He has headache and numbness, but they saved his eye and he can open it. We are very blessed!
He also was referred to an eye specialist who helped so much. He is still on Valacyclivor by mouth.
It is a lousey disease and there is a vaccine called Shingrix that is a dead virus and is very effective.
Greg will receive it in about 5 months.
Hello to all caregivers. The CAR - T cell transplant is challenging, but you have access to such wonderful support at the Mayo. Listen to them and let them help you, because it is so worth it!

Hi - this is Barb again with an update on my son, Greg. His shingles are gone, thanks to very heavy doses of Valacyovir which was given in the hospital by an intervenious drip. They did this for a week. That was Jan 28th. Our Dr in Winnipeg was in contact with the wonderful Dr Lin at the Mayo Clinic, Rochester during this time.
Greg has a lot of nerve pain, even now in his head. He has headache and numbness, but they saved his eye and he can open it. We are very blessed!
He also was referred to an eye specialist who helped so much. He is still on Valacyclivor by mouth.
It is a lousey disease and there is a vaccine called Shingrix that is a dead virus and is very effective.
Greg will receive it in about 5 months.
Hello to all caregivers. The CAR - T cell transplant is challenging, but you have access to such wonderful support at the Mayo. Listen to them and let them help you, because it is so worth it!

Thank you for the encouragement! After the failed chemo treatments and the resulting "kicks in the gut," it was nice to hear from someone who has been through the same scenario as my wife. Frankly, while I have a somewhat positive outlook, past experience has set me up for another failure...but I DO have hope. You've made that hope a lot stronger. We are fortunate that our two sons live about 1.5 hours away and are already providing great support for my wife --and me. Our daughter will be flying to MN from TX (if internal flights are still taking place) to stay in the Gift of Life House in Rochester with her mom immediately after the infusion and and our boys will be coming to give her some daytimes out of the house. I'll be staying with her until our daughter arrives, and as necessary as other close friends come to be the live-in caregiver. I'll also be doing the shopping, cooking etc. to take some of the burden off the live-ins. In other words, we do have a solid support system. And yes, her T Cells are now visiting the lab in California and are getting zapped or whatever they do to them to get them ready for the infusion. Mayo has gone over all the possible side effects and risks, and I mean ALL... several times.
Thank you for giving me a little more faith in miracles.