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.

nvorias1 | @nvorias1 | Apr 2 7:42pm

Just waiting for the call to start processing the T cells any good results from previous patients

kaybh | @kaybh | Apr 5 11:02am

Hi, someone doing a study on CAR-T recipients posted recently, and I would love to give feedback to you on what I wished I had known or better understood going through the process. I am 1 year post CAR-T now.

nvorias1 | @nvorias1 | Apr 6 9:15am

In reply to @kaybh "Hi, someone doing a study on CAR-T recipients posted recently, and I would love to give..." + (show)

How bad do you feel

Colleen Young, Connect Director | @colleenyoung | Apr 6 10:48am

In reply to @kaybh "Hi, someone doing a study on CAR-T recipients posted recently, and I would love to give..." + (show)

@kaybh, please note that the post to which you refer has been removed as it contravened the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
See guideline #5.
Solicitations for research must be Mayo Clinic and approved by the institutional review board. We do this to ensure the security of members and proper usage of their information.

That said, your sharing your experience about what you wish you had known about the process would be very helpful to fellow members like @nvorias1 who may be starting the process. What tips would you offer someone starting CAR-T?

nvorias1 | @nvorias1 | Apr 8 10:16am

In reply to @nvorias1 "How bad do you feel" + (show)

Would love to hear your experience

nvorias1 | @nvorias1 | Apr 18 3:05pm

I just heard from the nurse gave me schedule but she told me to bring to hospital my own clothes not just pj you will showering everyday and you are supposed to walk 1 mile a day does that sound right

kirkwilliams2049 | @kirkwilliams2049 | Apr 18 6:16pm

In reply to @nvorias1 "I just heard from the nurse gave me schedule but she told me to bring to..." + (show)

Showers and clothes yes. Exercise? Definitely. 1 mile every day - I am not sure about that. I was learning a new programming language when I went in (for 2 weeks) so I was pretty sedentary. I walked around the facility everyday but didn’t do a mile. In retrospect, I wish that I had done more. My back deteriorated quite a bit.

Hope this helps. Good luck and best wishes!

mohusker | @mohusker | Apr 19 10:18am

In reply to @nvorias1 "I just heard from the nurse gave me schedule but she told me to bring to..." + (show)

Yes, get out of bed and start walking is the best

nvorias1 | @nvorias1 | Apr 19 2:34pm

Thank you both any other suggestions that might be helpful after reading some of these posts this sounds brutal but I’m going to stay positive

kirkwilliams2049 | @kirkwilliams2049 | Apr 19 4:29pm

In reply to @nvorias1 "Thank you both any other suggestions that might be helpful after reading some of these posts..." + (show)

Sorry if I made it sound brutal. It was actually a piece of cake. Just remember positivity is the best therapy!

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