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CAR-T Cell Therapy: Introduce yourself and connect with others
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 5 days ago | Replies (209)Comment receiving replies
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.