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.

hanya | @hanya | 1 day ago

In reply to @loribmt "@hanya You are always such a bright spirit, Hanya! Your positivity is golden and as I’ve..." + (show)

@loribmt

@hanya You are always such a bright spirit, Hanya! Your positivity is golden and as I’ve seen in my own life, it can be the driving force behind our survival! ☺️

Oh my gosh, I know it’s not funny but I couldn’t help chuckle with your comment about ‘your house and finances not being in order’…needing more time! Is there EVER enough time??? I’ve been through that myself. I’d always thought I was ‘fairly’ organized until leukemia hit out of the blue for me! Boom! Was in the hospital for 5 weeks the first time, with no certainty that I would return home.
My husband and I always had a tacit division of labor. He had his jobs and I had mine. Along with household issues, I also paid bills, fortunately through online checking. But husband had no clue of the utility accounts, passwords, etc. So here I was, plugged into my chemo in a hospital bed with my iPad, opening a new email account for bills only, so that my husband got the notifications, when to pay, etc. We are both organized in our own right, but when it came to merging our ‘jobs’ it was obvious we had a lot of work to do. I believe we are now better organized to the point where we’ve made it easier for our daughter to find pertinent paperwork/financials. But our house…le sigh…no matter how hard I try there is always excess somewhere!

When we’re not feeling well, the last thing we want to focus on is cleaning and prepping for the end. We should be enjoying our time on the planet! So whatever you feel you need to do, mete it out…set a timer and only do so much work at a time, devoting the rest of the day to focus on essentials and joyful moments.

Now, for that 2nd opinion on your health…if you’d like to make an appointment with Mayo Clinic, here’s a link to get you started!
http://mayocl.in/1mtmR63
There are 3 Mayo Clinic Campuses. Rochester, MN
Phoenix, AZ and Jacksonville, FL. They all have impressive hematology departments. I wouldn’t be here today without the amazing care I received in Rochester. So of course I’m a little biased. ☺️

Happy Thanksgiving to you and your family, Hanya. Hugs.

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@loribmt GOOD MORNING! Wednesday morning! Nov 19th
Had good appointment and decent CBC . Liver ok
All numbers stable not going down . Some even up by hairline 😍Next appointment on December with HEM/ONC PA . I CERTAINLY CHALLENGE HER TO LEARN AS MUCH AS POSSIBLE ABOUT MF ,
Treatments, and most advanced!
She reassured me she is there for my needs ! Very important to be able to access medical specialists!
I have been reading and re-
Reading medical information! I am driving distance from MASS GENERAL AND DANA FARBER , MSK AND OTHERS . My husband will drive me where I need and want to go !
Thanksgiving in a week from tomorrow! I will be thankful if I can go to my church on the day!!
My new friend I met on this forum , we have been privately chatting and there for each other!
I will be reading posts on this forum !
Enjoy THANKSGIVING

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