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.

oregonami58 | @oregonami58 | Apr 19 9:19pm

Hi all!
Checking in for 1st time. I'm 66 years old married guy with mm having been diagnosed in late 2016. Looking forward to sharing experiences, information and encouragement.

Lori, Volunteer Mentor | @loribmt | Apr 20 9:00am

In reply to @oregonami58 "Hi all! Checking in for 1st time. I'm 66 years old married guy with mm having..." + (show)

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?

oregonami58 | @oregonami58 | Apr 20 1:21pm

In reply to @loribmt "Hi @oregonami58 Joining @gingerwhite in welcoming you to Connect in another post where you mentioned having..." + (show)

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?

oregonami58 | @oregonami58 | Apr 20 1:26pm

In reply to @oregonami58 "Thanks for the introduction. I was looking for group forum online and this one looks well..." + (show)

For context I am 66 and survivor of mm for 9 years!

Lori, Volunteer Mentor | @loribmt | Apr 20 5:29pm

In reply to @oregonami58 "Thanks for the introduction. I was looking for group forum online and this one looks well..." + (show)

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?

oregonami58 | @oregonami58 | Apr 21 12:57am

In reply to @loribmt "Hi @oregonami58, There’s no specific age cut-ff for having CART-T Therapy. A patient’s overall health, function..." + (show)

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!

robertk | @robertk | Apr 21 12:36pm

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

Lori, Volunteer Mentor | @loribmt | Apr 21 7:44pm

In reply to @robertk "Hi my name is Bob King i live in central Ill and i was diagnosed with..." + (show)

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?

robertk | @robertk | Apr 23 8:22am

In reply to @loribmt "Hi Bob, There can be different stages of WM. Often in the early period of the..." + (show)

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

Lori, Volunteer Mentor | @loribmt | Apr 23 9:00am

In reply to @robertk "thanks for the information aim thinking of going to Mayo clinic to see if there in..." + (show)

It’s never a bad idea to get a second opinion. Having had my transplant at Mayo, I may be a bit biased, but the care I received there is 2nd to none! ☺️
Here is a link you can use to start your request for an appointment: http://mayocl.in/1mtmR63
Just click on the link and follow the prompts for new patient.
There are 3 campuses…Rochester,MN Jacksonville, FL or
Phoenix, AZ.
Do you live near one of those areas?

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