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?

@smokie

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

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Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

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@smokie

Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

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What a relief that must be for you, @smokie. Fatigue is a reality for many who have had cancer treatment, during and longer term. Members are talking about cancer-related fatigue in the Managing Symptoms group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/) in this discussion:

– Fatigue and cancer treatment https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/
You may wish to read some of the coping strategies members share.

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Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

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@annmillercarr

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system–which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since–so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

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I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

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@smokie

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

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Glad to hear your son is doing well Barb. Interesting hearing your son had a reaction to his immunoglobulin infusions. I did as well which surprised my oncologists. In my case, they changed the product and provided some pre infusion medications. My reaction surprised them as apparently this is not prevalent. If you folks have the time, I encourage you to check out the Cancer: Managing Symptoms site on Mayo Connect. There may be some information shared by others you folks can use to help get past the tiredness.

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@grandpabob

I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

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Yes, he has regular monthly blood tests. He had one at Mayo's last week, of course. Dave sees his new hem/onc in our new town at the end of the month for the first time and will have another lab then. Our former town was about 1.5 hours closer to Mayo's than our present home. But driving doesn't bother us and it is still a driveable distance for us.

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Hi everyone! No we are not yet back in Africa. The criteria for our return is for Mark, my husband, to have one year of clear PET scans after the completion of the most recent treatment. Though he was in complete remission one month after his CAR-T treatment, a lymphoma tumor popped up ON HIS LEG, of all places, about three months later. That was successfully radiated, but on the same PET scan that showed the success of eliminating THAT tumor, a NEW one appeared near his adrenal gland. He then started on pembrolizamab (Keytruda) to stimulate his "wimpy" T cells. The NEXT two scans showed that same stubborn tumor REMAINING in place. It was no larger and no new spots appeared, but, all things being equal we all wanted that thing GONE! It was determined that it too could be radiated, so that's what we are doing at the present moment. His is also continuing with the Keytruda. The knowledge that we cannot possibly return to Africa for a long time yet is sad. The outlook would be much more optimistic if we hadn't had so many birthdays before Mark was diagnosed. Then we could just persevere until we finally defeat this cancer once and for all! But the longer this goes on, the closer we are to the age when we really should retire anyway. We are trying to find a professional role we can do from the U.S., but as you see, we are still regularly engaged in medical appointments, so that narrows the range of possibilities. It helps when we reflect on the fact that these two years since his diagnosis are a "bonus". He was pretty sick by the time we arrived at Mayo and didn't look like he would be around much longer. But he's still alive and feels quite well. So, with all of the "bumps in the road" we still have much to be thankful for. Thanks for "listening". It's sort of therapeutic to spell it all out.

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@raemark2010

Hi everyone! No we are not yet back in Africa. The criteria for our return is for Mark, my husband, to have one year of clear PET scans after the completion of the most recent treatment. Though he was in complete remission one month after his CAR-T treatment, a lymphoma tumor popped up ON HIS LEG, of all places, about three months later. That was successfully radiated, but on the same PET scan that showed the success of eliminating THAT tumor, a NEW one appeared near his adrenal gland. He then started on pembrolizamab (Keytruda) to stimulate his "wimpy" T cells. The NEXT two scans showed that same stubborn tumor REMAINING in place. It was no larger and no new spots appeared, but, all things being equal we all wanted that thing GONE! It was determined that it too could be radiated, so that's what we are doing at the present moment. His is also continuing with the Keytruda. The knowledge that we cannot possibly return to Africa for a long time yet is sad. The outlook would be much more optimistic if we hadn't had so many birthdays before Mark was diagnosed. Then we could just persevere until we finally defeat this cancer once and for all! But the longer this goes on, the closer we are to the age when we really should retire anyway. We are trying to find a professional role we can do from the U.S., but as you see, we are still regularly engaged in medical appointments, so that narrows the range of possibilities. It helps when we reflect on the fact that these two years since his diagnosis are a "bonus". He was pretty sick by the time we arrived at Mayo and didn't look like he would be around much longer. But he's still alive and feels quite well. So, with all of the "bumps in the road" we still have much to be thankful for. Thanks for "listening". It's sort of therapeutic to spell it all out.

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Hi @raemark2010, It is good to get an update from you and Mark. It must be disappointing and frustrating that the lymphoma has re-appeared in a couple of places. Thankfully there are treatment options that appear to be working. Yes, writing can be therapeutic. You're a very good writer and I can see that you weigh the setbacks and blessings, and find the hope and gratitude where it lies ready for the plucking.

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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?

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@smokie

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?

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@smokie, oh, I'm so sorry to hear about Greg getting shingles (herpes zoster). Because cancer treatment weakens the immune system, cancer patient are predisposed opportunistic infection, like shingles. The risk is higher for people with blood cancers than solid tumor cancers as this article explains.

– People With Cancer May Face Greater Shingles Risk https://www.webmd.com/cancer/news/20190109/people-with-cancer-may-face-greater-shingles-risk

How is the shingles outbreak being treated? How's he feeling?

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@smokie

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?

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Hello Barb, Bob here. I did not get shingles since my treatment. I did however receive a immunization regimen which started about a year after treatment. This consisted of the regular childhood immunization such as, Influenza, Tdap, Hep B, Pneumococcal and shingles.

Did Greg receive any of these? Is he scheduled to?

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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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I am so sorry. This has been a hard year for you. My husband went from having Hep B, a liver cancer diagnosis in 2017, transplant in 2018 to a dementia diagnosis last fall. He's 57 and we will be married for 28 years in April.
If you have a church you attend try talking to your minister, my faith has really helped carry me. Or consider a therapist. I have been seeing one and it really has helped me.
Not to mention all the support you can get here.

Many blessings and please keep us updated,
JoDee

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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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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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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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