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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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Replies to "I'm afraid. Afraid of my wife's upcoming CART-T treatment and my mental ability to continue as..."

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.

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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