CAR-T Cell Therapy: Introduce yourself and connect with others

Thanks for good report on the older fellow! I am 66 and in good condition so I guess folks can place bets on when I can get car- t.
I live in Bend Oregon so I would go to OHSU in Portland. I actually had a team assigned ready for intake when the doctor there noticed I had to fulfill another round of revlimid.
So be it but whenever I go my wife will be my caretaker during in patient portion similar to when I did sst. The hospital has designated facilities for that.
I appreciate all your responses and excited to stay up to date on these topics and people's experiences and hopefully progress!

thanks for the information aim thinking of going to Mayo clinic to see if there in better treatment for me and at what stage i should go

Hi Bob, There can be different stages of WM. Often in the early period of the disease patients don’t require treatment and are in active surveillance. As the M protein increases it can indicate a change in your condition.

I have a couple of informational links for you that might be helpful to learn more about the blood condition.
This from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
~~
International Waldenstrom’s Macroglobulinemia Foundation is a great source of information too!
https://iwmf.com/
Since you posted here in the CAR-T transplant discussion has your doctor suggested a transplant for you? Have you been diagnosed with Multiple myeloma?

Hi my name is Bob King i live in central Ill and i was diagnosed with Waldon Storm in 2022 and my protein level are at 3700

Hi @oregonami58, There’s no specific age cut-ff for having CART-T Therapy. A patient’s overall health, function and fitness level are more important than age in determining their eligibility for this type of therapy.

There’s a discussion in the CAR-T group that you might find interesting:
~CAR-T - Looking for statistical data for over 70 age group
https://connect.mayoclinic.org/discussion/car-t-data/
And particularly this reply posted by @cdsarmiento, who shared that her husband had his CAR-T therapy at the age of 82!
https://connect.mayoclinic.org/comment/1099324/
When you get to the point of decison making, your doctor and transplant team will be able to assess your overall health and help you determine whether it’s the best course for you.
In the mean time, as you said, keep plugging away on the Revlimid and kyprolis…been successful so far. ☺️
Are you near the transplant center should you require the CAR-T procedure?

Thanks for the introduction.
I was looking for group forum online and this one looks well attended and organized so kudos to everyone maintaining this service!
I was told that my revlimid treatment had not run its full course of efficacy having been interrupted in 2017 for sst procedure. Doc at OHSU said I have to continue updated rev/kyprolis to completion then will be eligible for car-t. Obviously I hope current treatment lasts as long as possible in order to extend disease suppression.
My question is at what point does age limit car-t eligibility if, God willing, I keep plugging away successfully on kyp/rev?

Thanks for the introduction.
I was looking for group forum online and this one looks well attended and organized so kudos to everyone maintaining this service!
I was told that my revlimid treatment had not run its full course of efficacy having been interrupted in 2017 for sst procedure. Doc at OHSU said I have to continue updated rev/kyprolis to completion then will be eligible for car-t. Obviously I hope current treatment lasts as long as possible in order to extend disease suppression.
My question is at what point does age limit car-t eligibility if, God willing, I keep plugging away successfully on kyp/rev?

Hi @oregonami58 Joining @gingerwhite in welcoming you to Connect in another post where you mentioned having MM that required an autologous stem cell transplant a few years ago.
Link to comment:
https://connect.mayoclinic.org/comment/1285733/
Now it looks as though you may be a candidate for CAR-T therapy, which is really gaining ground in the treatment of MM. So welcome and keep us posted. Sharing your experiences with MM, Auto-transplant and CAR-T will really be helpful and encouraging to many others in the same situation. Do you have a potential timeline for CAR-T?