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

Posted by Colleen Young, Connect Director @colleenyoung, Sep 17, 2018

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?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

4health4bonnie | @4health4bonnie | Apr 24 1:05pm
In reply to @oregonami58 "Thanks for good report on the older fellow! I am 66 and in good condition so..." + (show)
@oregonami58

Thanks for good report on the older fellow! I am 66 and in good condition so I guess folks can place bets on when I can get car- t.
I live in Bend Oregon so I would go to OHSU in Portland. I actually had a team assigned ready for intake when the doctor there noticed I had to fulfill another round of revlimid.
So be it but whenever I go my wife will be my caretaker during in patient portion similar to when I did sst. The hospital has designated facilities for that.
I appreciate all your responses and excited to stay up to date on these topics and people's experiences and hopefully progress!

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I am just finishing Car T at ohsu. Dr Desai is my doctor. I am on day 30. I will find out next week if it worked! I am very immune compromised after everything. I have to get growth factor shots every five days. I didnt realize how long it can takefor immunity to return. My care has been excellent.
Bonnie

REPLY
kirkwilliams2049 | @kirkwilliams2049 | Apr 24 4:41pm

Day 30 was when I was declared in remission again after a PET scan. At month 14 my immune system is still not great. I may be going back on ivig infusions again in May. It’s really not all that bad though. I contracted a flu bug from my wife and both of us recovered at the same time.

Anyway, good luck. It’s nothing but up from here! Positivity is the best therapy.

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