Anyone had CAR-T therapy for solid tumors? (pancreatic cancer)

Thinking of you, @indyellen

Thank you! I’ve learned that the trial is actually for a procedure called TCR — T-Cell Receptor. It’s similar to CAR-T in many ways. I expect to learn soon if I’m approved.

I’m not sure if my mantle cell lymphoma is relevant to your cancer, but I’ve been to Fred Hutch/SCCA in Seattle in 2015 for a autologous stem cell transplant, then 2022 for CAR-t therapy when the MCL developed to a tumor below my brain. I am currently in remission.

Both visits, I have had a very positive experience at Fred Hutch and hope you have a similar experience and outcome.

Hi @brentw48 Welcome to Connect. It’s positive stories like yours that give hope to so many others who are going through a similar experience.
You’ve had some challenging medical adventures over the few years. I’m happy for you to be on the other side of all the medical drama!

I hope you’ll share more about your experiences with CAR-T Therapy. We have a small, but growing. number of members who have gone through the treatment process. So it’s really helpful when more veteran CAR-T members can contribute to the conversations.

This discussion (link below) would be a good starting point if you’d like to tell your story. It could be helpful to new members such as @shop516 who will be undergoing the CAR-T transplant experience coming up soon and has questions you may be able to answer.

CAR-T Cell Therapy: Introduce yourself and connect with others
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
What was your recovery time from the CAR-T experience? Was it similar to the auto-transplant or shorter?

It is not clear to me anyone here had Pancreatic Cancer and had CAR-T therapy? What is the best place to have CAR-T therapy, trials etc. My husband has stage IV metastatic Pancreatic MiENEN . He is currently on Folfirinox SoC.

Welcome to Connect, @utravelone8671 Currently it looks as though @indyellen is the only member listed as having pancreatic cancer who is waiting for approval for a TCR procedure, which is similar to CAR-T. I’m hoping they’ll be able to share a little more information with you.

Since this is a highly specialized type of treatment a larger medical institution or teaching hospital such as Mayo Clinic, Cleveland Clinic, etc., would have a greater range of experience. If you’re interested in a 2nd opinion from Mayo, here is a link to their main website where you can request an appointment. http://mayocl.in/1mtmR63

Another option is to look into clinical trials. I’m posting a link to clinicaltrials.gov and have queued up the CAR-T trials, some of which include pancreatic cancer.
https://clinicaltrials.gov/search?cond=Pancreatic%20Cancer&intr=CAR-T%20Therapy&locStr=USA&country=United%20States&aggFilters=status:rec
Has your husband’s oncologist discussed the possibility of CAR-T therapy?

thank you @loribmt! We have an appointment with Mayo Clinic coming up in March. His Oncologist has not talked to him about CAR-T yet. We are proactively looking in case the current treatment stops responding, or if there are better treatments out there.
Thank you for pointing me to the CAR-T trials, they all look interesting. Especially NCT06051695.

I suppose no one here is on this trials to share any opinions? Or what's your opinion @loribmt ?

If your husband has an appointment with Mayo in March, (congratulations by the way!) I’d suggest you relax a little and wait until his visit with the specialist. It’s customary for the doctor/team to schedule appointments for tests while your husband is there to get a full assessment.
A unique aspect of Mayo is their collaborative approach to medicine. All feasible avenues of treatment are explored and if there is the possibly of CAR-T therapy, then a specialist from the BMT Transplant department would be brought into the case. I’m a bi-product of that department and I guess a little biased. But if there is the possibility of CAR-T for your husband I can’t speak highly enough of the teams at Mayo. You’d both be in excellent hands.
If there are trials or treatments they would be able to provide you with that information.
I should have asked…which Mayo Campus are you visiting? Do you have any specific questions about the visit, location, lodging…?

thanks @loribmt !! Appreciate the information. We will be visiting the Rochester location. If you have lodging or anything else that help us, please let me know, thank you so much!

Ask and you shall receive. 😅 Here is a list of some of the more popular discussions regarding lodging in Rochester.
If you’ve never been to Rochester, the Clinic is easy to drive to…no white knuckle driving in Rochester. Many of the hotels right near the clinic have kitchenettes for long term stay. Many hotels are also connected to the subway system so you don’t have to go outside or find parking.

This link will take you to the Mayo page where you’ll find maps of the campus and area around the clinic. There is also free Concierge services if you need help travel plans or to answer any questions you might have.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
The following are recommendations people have shared in related discussions! Grab a cuppa while you scroll through some of the conversations. Pull up google maps and you’ll be able to see the hotel locations as well as restaurants.

- Looking For A Hotel Suggestion
https://connect.mayoclinic.org/discussion/looking-for-a-hotel-suggestion/
- Closest / best hotel for one night stay
https://connect.mayoclinic.org/discussion/closest-best-hotel-for-one-night-stay/
- Rochester Hotel rooms/kitchenette/grocery suggestions
https://connect.mayoclinic.org/discussion/rochester-hotel-roomskitchenettegrocery-suggestions/
- Rochester hotel with suites, good gym, and free breakfast/wifi
https://connect.mayoclinic.org/discussion/rochester-hotel-with-suites-good-gym-and-free-breakfastwifi/
- Mayo Clinic Rochester MN: Where to Stay? Shuttles? Parking?
https://connect.mayoclinic.org/discussion/where-to-stay-1st-visit
-Which hotels at Mayo in Rochester are connected to skywalk/subway? -https://connect.mayoclinic.org/discussion/hotels/

-How soon does one secure lodging for a 3 month stay in Rochester
https://connect.mayoclinic.org/discussion/how-soon-does-one-secure-l9dging-for-a-3-month-stay-mayo-rochester/
.
Mayo Clinic looms large as you enter the city. But it is very easy to navigate with lots of signage and information booths along with volunteers in Blue Jackets around every building ready to answer questions or give directions.

When is your husband’s appointments?