I decided to do CAR-T for ovarian cancer: Anyone else?

Posted by amywells @amywells, Jan 15 9:13am

I have Stage 3b HGSOC with my first recurrence a year after finishing frontline surgery and chemotherapy. I decided to do a CAR-T trial as the next step instead of standard chemo. Has anyone else taken this path?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

juliea55 | @juliea55 | Jan 17 8:34am

In reply to @amywells "My study is CAR-T. I’m not aware of whether the other option exists for my mutation" + (show)

@amywells So many new things out there every day. Hope your trial is a winner!

amywells | @amywells | Jan 17 10:41am

I appreciate your encouragement!
These trials are a big decision and not easy to go through 🩷

Colleen Young, Connect Director | @colleenyoung | Jan 29 3:24pm

In reply to @amywells "I appreciate your encouragement! These trials are a big decision and not easy to go through..." + (show)

@amywells, if you or your caregiver are interested, there is a support group on Connect dedicated to CAR-T Therapy here:
- Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group https://connect.mayoclinic.org/group/car-t-cell-therapy/

How are you doing? When do you start CAR-T therapy?

amywells | @amywells | Jan 30 7:45am

In reply to @colleenyoung "@amywells, if you or your caregiver are interested, there is a support group on Connect dedicated..." + (show)

@colleenyoung oh, thank you for this information…. I had been under the impression it was for caregivers only and am glad to know I can participate as well. I had the CAR-T infusion on Jan 13th ands was discharged from hospital on Jan 25th. Not a fun experience but I have no regrets. I have CT scans on Feb 22 which will give the first indication of my response.

Helen, Volunteer Mentor | @naturegirl5 | Jan 30 9:33am

In reply to @amywells "@colleenyoung oh, thank you for this information…. I had been under the impression it was for..." + (show)

@amywells I've been following your posts here as you decided to try the CAR-T infusion. I'm hoping this trial results in good news on your CT scheduled for Feb. 22. I'm also hoping that you find support with the CAR-T Cell Therapy support group here on Connect.

We so often are the ones who care for our families. So how do we take care of ourselvs? I have to be careful about the lotions I apply for moisturizing as I have so many allergies. I use a rather "boring" moisturizer cream (no commercial fragrance) recommended by my dermatologist. I love the scent of lavender. So, I bought some lavender essential oil and I add a little to the moisturizer when I apply it. A little thing I do for myself. I find this very soothing.

What do you do for yourself to take care of you?

amywells | @amywells | Jan 30 12:39pm

Among other things I practice a form of Buddhism that helps me access a lot of internal strength and gratitude. And I do jigsaw puzzles!

Helen, Volunteer Mentor | @naturegirl5 | Jan 30 6:00pm

In reply to @amywells "Among other things I practice a form of Buddhism that helps me access a lot of..." + (show)

@amywells Sounds good. I love jigsaw puzzles too. You need a place to set it up and leave it so that you can work on it at leisurely pace. Do you set it up on your dining room table? Or in a spare room?

amywells | @amywells | Jan 31 10:09am

I take over the dining room table since I’m not doing a lot of dinner parties these days!

amywells | @amywells | Feb 26 2:31pm

Happy to report that the CAR-T trial I did for ovarian cancer in January has shown positive results. My CT scans this week showed greater than 50% reduction in the malignant nodules and no new cancer. The research team is very excited. Apparently there is a decent chance there will be additional reduction in the coming months but only time will tell for sure. Next scans in 5 weeks.