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.

Colleen Young, Connect Director | @colleenyoung | Mar 26, 2023

In reply to @pgollinger "Hello everyone, I have stage 2 multiple myeloma and will be starting a clinical trial for..." + (show)

@pgollinger, any update? Were you randomized to receive CAR-T cell therapy? If not, what treatment are you getting?

Colleen Young, Connect Director | @colleenyoung | Mar 26, 2023

In reply to @ericg "I'm looking for studies on Car-T or other antibody treatment for ovarian cancer- high serous? I've..." + (show)

Hi @ericg, you're right that CAR-T cell therapy is still being studed in solid tumors like ovarian cancer. See this review, albeit from 2017.
- CAR-T cell therapy in ovarian cancer: from the bench to the bedside https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610030/

Here is a list of current clinical trials at Mayo Clinic in treatment of ovarian cancer https://www.mayo.edu/research/clinical-trials/search-results?studySiteStatusesGrouped=Open/Status%20Unknown&pocId=CON-20375922&_ga=2.45933346.784331118.1679751715-246278321.1677350292

You might also be interested in joining the discussions in the Gynecologic Cancers support group: https://connect.mayoclinic.org/group/gynecologic-cancer/

henry55 | @henry55 | Mar 26, 2023

In reply to @henry55 "Hello, I am currently not receiving any cancer treatments. Just a PET scan every 6-8 months..." + (show)

Yes thank goodness for CAR- T. I just got the great news regarding my last PET scan and "all is clear". Now we look forward to my 2 year mark. This is / was my 2nd fight with cancer.... I'm done. I'm so happy your doing well. My CAR-T was August 2021.

Bob, Alumni Mentor | @grandpabob | Mar 27, 2023

That is great news Henry. I am sure that getting that result from your doctors was a relief.
Thank you for sharing.

pgollinger | @pgollinger | Mar 27, 2023

In reply to @colleenyoung "@pgollinger, any update? Were you randomized to receive CAR-T cell therapy? If not, what treatment are..." + (show)

To all
I have begun treatment. VRD for the next 18 weeks. After that I will be randomized to either CAR T cell therapy or continued standard therapy. I have had one shot of Velcade. Second shot today. I am taking Revlimid daily and dexamethasone once a week. My bone pain has gotten worse and I am experiencing itching. Overall I’m still doing ok. I still play golf a couple of times a week. I had a full body MRI as part of the trial. It revealed lesions in almost all of my bones and a slight fracture in my spine at T3. I’ll keep posting as my treatment continues.

Colleen Young, Connect Director | @colleenyoung | Apr 10, 2023

In reply to @pgollinger "To all I have begun treatment. VRD for the next 18 weeks. After that I will..." + (show)

Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able.

Colleen Young, Connect Director | @colleenyoung | Apr 19, 2023

In reply to @363 "Thank you again so much..JoAnn just came on ventilator a few hours ago and is now..." + (show)

Thinking of you @363 and JoAnn.

363 | @363 | Apr 19, 2023

In reply to @colleenyoung "Thinking of you @363 and JoAnn." + (show)

Thank you so much Colleen..That truly means alot to me...very sadly I will inform you my incredible, brave sister JoAnn passed away..Everything failed her and I am now left to cherish my memories and she will be forever in my heart..Your kindness and the support of the Car-T Therapy is amazing..Thank you for all you do..

Colleen Young, Connect Director | @colleenyoung | Apr 19, 2023

In reply to @363 "Thank you so much Colleen..That truly means alot to me...very sadly I will inform you my..." + (show)

Hi, so good to hear from you. Life is precious and we know that even more profoundly when it is taken from us too soon. I hope that my message will ignite a memory or moment of your sister's smile to hold in your heart. I'm sure she had a big smile.

elwooodsdad | @elwooodsdad | Apr 20, 2023

I am 75+ years old, and have Non Hodgkin’s lymphoma. I was diagnosed last fall, and have had six infusions of RChop therapy. After the third infusion the PET scan showed the issues appeared to have been resolved. After the sixth infusion, the PET scan showed a the lesions were back. My oncologist said he had never seen a turnaround such as this. There are some maintenance infusions we will be discussing. I am getting weaker, but no pain, just frightened. The topic of CAR T therapy is also on the table, which would be done away from home and require an extended stay of several weeks.

The reading I have done on CAR T, makes it sound draconian. I haven’t been examined by Mayo or another clinic, and I question whether or not I’ll be deemed an acceptable candidate, but I am curious as to the experience of those having had this treatment. The reading I have done (Bless God and Google) does not give much comfort. I realize much of what is in the public domain was drafted by attorneys concerned about liability. Can someone toss me a rope?
Many thanks,

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