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?

@grandpabob

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.

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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.

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@ruttgerbay

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.

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@ruttgerbay, Encouragement and sharing our experiences is why we are here on Connect. I am so glad you have a strong support system in place. It will be comforting to both you and your wife for sure. So glad you found the Gift of Life Transplant House. We stayed there for about ten weeks. The people there are wonderful.

Try to take everything in stride, I feel you are in the most capable of hands at the Mayo Clinic.

Please continue to reach out at anytime.

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@smokie

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!

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Hello @smokie, So glad to hear that the shingles is resolved. Thanks for Posting the update.

Has Greg started to receive his vaccinations as yet?

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@smokie

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!

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Hello @smokie – How is Greg doing from a tiredness perspective? Is that getting better?

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@ruttgerbay

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.

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@ruttgerbay, how are you and your wife doing? When is she scheduled to get CAR-T therapy? Has COVID-19 changed things for you?

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She's having kind of a rough time…day by day things change. Last blood test resulted in a bag of platelets, magnesium and phosphorous. Neutropenic as well. No real interest in eating. Keeps losing weight, gets angry when I encourage her to eat. Other than that…. Scheduled to start the process a week from today with a couple of more tests, followed by line placement, then with chemo before the infusion which starts on the 28th. No real idea about the impact of COVID-19: Mayo Rochester has shut down elective surgery, office visits and procedures effective 3/23. I highly doubt this would be considered elective. We're doing what we've been doing for the last 11 months or so …. staying home, except for trips to the hospital for blood tests (2Xweek) and into Mayo for whatever. I make occasional runs to the pharmacy for whatever new prescription the docs think will help whatever it is that day and to the grocery. Glad we live in a small town where there are no crowds and folks aren't panicked over toilet paper! Thanks for asking!

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@ruttgerbay

She's having kind of a rough time…day by day things change. Last blood test resulted in a bag of platelets, magnesium and phosphorous. Neutropenic as well. No real interest in eating. Keeps losing weight, gets angry when I encourage her to eat. Other than that…. Scheduled to start the process a week from today with a couple of more tests, followed by line placement, then with chemo before the infusion which starts on the 28th. No real idea about the impact of COVID-19: Mayo Rochester has shut down elective surgery, office visits and procedures effective 3/23. I highly doubt this would be considered elective. We're doing what we've been doing for the last 11 months or so …. staying home, except for trips to the hospital for blood tests (2Xweek) and into Mayo for whatever. I make occasional runs to the pharmacy for whatever new prescription the docs think will help whatever it is that day and to the grocery. Glad we live in a small town where there are no crowds and folks aren't panicked over toilet paper! Thanks for asking!

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Hello @ruttgerbay – It sounds like you are very patient. Do your best to stay that way. I can relate to what your wife is going through. My wife laughs (now) about how she had to mash the noodles in my soup in order for me to eat them.

Stay strong – Thinking of you both. Reach out anytime when you can.

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@ruttgerbay

She's having kind of a rough time…day by day things change. Last blood test resulted in a bag of platelets, magnesium and phosphorous. Neutropenic as well. No real interest in eating. Keeps losing weight, gets angry when I encourage her to eat. Other than that…. Scheduled to start the process a week from today with a couple of more tests, followed by line placement, then with chemo before the infusion which starts on the 28th. No real idea about the impact of COVID-19: Mayo Rochester has shut down elective surgery, office visits and procedures effective 3/23. I highly doubt this would be considered elective. We're doing what we've been doing for the last 11 months or so …. staying home, except for trips to the hospital for blood tests (2Xweek) and into Mayo for whatever. I make occasional runs to the pharmacy for whatever new prescription the docs think will help whatever it is that day and to the grocery. Glad we live in a small town where there are no crowds and folks aren't panicked over toilet paper! Thanks for asking!

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Hello @ruttgerbay – Just checking in with you. Car-T infusion date is very near from the timeline you identified in your last post. I want you to know that beyond your family and friends, there are many supporters out here in Mayo Connect land.
How are you Doing?
How is your wife doing?

Keep in touch, we are rooting for your entire family. Take added comfort in the fact your wife is being treated in one of the best health care systems in the country and that the Transplant House take their position in health care very seriously as well.

I encourage you to reach out at any time.

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Actually, we both are hanging in there. She's now receiving her last day"s pre transplant infusion. Then, as you know, the two rest days, followed by the "big day," which, as we understand is quite anticlimactic…..just like any chemo or transfusion day.

As I understand, anytime after the infusion, we need to be prepared. All in all, we're looking forward to it…and to it working and slowly getting back to a somewhat normal life,

She's doing well, tho she has a bunch of little nucense problems that keep cropping up. But basically under control. Well, sort of.

Me? I'm here. I'll make it. It's hard being a helper who can't fix things……

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Hello @ruttgerbay – So glad the hear you are hanging in there with all that is transpiring around you.
From a physical stand point, I agree the Car-T infusion is not a lot different, with the exception it is usually a short visit. But mentally, such a great feeling knowing this new treatment is getting underway.

Yes, be prepared for the side effects, they differ to some extent for everyone we were told.

I am glad you are there. You may not be able to fix the treatments or the disease, but rest assured you are fixing and awful lot for your wife and family at this time. Never ever sell yourself short.

Remember, we on Mayo Clinic Connect are here for you anytime you feel the need to reach out.

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@ruttgerbay

Actually, we both are hanging in there. She's now receiving her last day"s pre transplant infusion. Then, as you know, the two rest days, followed by the "big day," which, as we understand is quite anticlimactic…..just like any chemo or transfusion day.

As I understand, anytime after the infusion, we need to be prepared. All in all, we're looking forward to it…and to it working and slowly getting back to a somewhat normal life,

She's doing well, tho she has a bunch of little nucense problems that keep cropping up. But basically under control. Well, sort of.

Me? I'm here. I'll make it. It's hard being a helper who can't fix things……

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@ruttgerbay, I get that feeling of being a helper who can't fix things. I bet @raemark2010 @greta_k @valerie912 and @smokie do too. As @grandpabob says by just being there you're doing a lot.

What is it like being at the hospital during the virus crisis? Is it quieter than usual? Where can you as a caregiver hang out when you have to wait for extended periods of time?

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@ruttgerbay

Actually, we both are hanging in there. She's now receiving her last day"s pre transplant infusion. Then, as you know, the two rest days, followed by the "big day," which, as we understand is quite anticlimactic…..just like any chemo or transfusion day.

As I understand, anytime after the infusion, we need to be prepared. All in all, we're looking forward to it…and to it working and slowly getting back to a somewhat normal life,

She's doing well, tho she has a bunch of little nucense problems that keep cropping up. But basically under control. Well, sort of.

Me? I'm here. I'll make it. It's hard being a helper who can't fix things……

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It is a helpless feeling not being able to “fix” things that’s for sure. But you are doing more than you can imagine. Hope everything goes well for you both.

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@colleenyoung

@ruttgerbay, I get that feeling of being a helper who can't fix things. I bet @raemark2010 @greta_k @valerie912 and @smokie do too. As @grandpabob says by just being there you're doing a lot.

What is it like being at the hospital during the virus crisis? Is it quieter than usual? Where can you as a caregiver hang out when you have to wait for extended periods of time?

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What's it like? Unreal. Mayo Rochester usually is not unlike Grand Central Station at rush hour. Now, All you see are a few patients …like maybe just a couple in a block-long hallway. Only outpatients can have one person accompaniing them: no one except patients in hospital. And they mean no visitors, caregivers or spouses. Just getting in the building is not unlike going thru a TSA checkpoint. They take your temp in an outer hall, then if no temp, you go to a desk where you answer questions. If you pass the test, in you go. I will admit we do feel quite safe. And where do I go while she's in the hospital and I'm not. I'll hang out at the Gift of Life Transplant House.

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@ruttgerbay

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.)

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How is your wife feeling? My mom has/is going through a very similar situation as your wife's journey. Its been a long 15 months. She will get her infusion on Thursday. I get the same feelings of not doing enough yet burnout at the same time. But day by day, as mom would say. All we can ask for. Hope all is well.

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Thanks for asking. Be prepared for an up/down roller coaster ride,. The infusion was nothing, but four days later she was in the hospital with CRS and neurotoxicity …just like they said would happen. The first few days she was basically non communicative …just guttural sounds. As time went on, it became words, kind of mumbles not unlike a stroke victim. It slowly got better to where we could carry on what would pass for a conversation. Yesterday was the best she had been since hospitalization 17 days before. Then yesterday pm it went to heck in a hand basket. She became totally confused and delusional. Today she'is extremely tired and uses simple yes and no in response to any comment. The nurse practioner says.she's doing as expected, and doing well, although it will be a long recovery. The hardest part is the total isolation from her, although we do FaceTime. I'm just kind of afraid to do so because I never know what will be on the other end. One thing I'm doing is keeping a day-by-day journal in case she ever wants to know what went on. It also makes me use my mind in this world of extremly limited human contact. But if it works…all the tough times will be forgotten.

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