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.

kirkwilliams2049 | @kirkwilliams2049 | 1 hour ago

In reply to @loribmt "Welcome to Connect, @anthea29 Wishing you continued success with your CAR-T journey! A couple of our..." + (show)

I am actually 17 months from the procedure and am doing very well. I am in a clinical trial and my quarterly checkup with my oncologist is in August. I don't have my final(?) PET scan until February. There are no signs of relapse yet. I have/had a relatively rare type: histiocyte rich DLBCL. A study of 58 patients with this type was conducted a few years ago. All were treated with CAR-T. After 2 years 29% were still in remission. So here's to the odds! Living life and looking forward to the continuing ride.

Lori, Volunteer Mentor | @loribmt | 2 hours ago

In reply to @anthea29 "Hi-Anthea here. Had CAR-T early June and will have my PET scan and bone marrow biopsy..." + (show)

Welcome to Connect, @anthea29 Wishing you continued success with your CAR-T journey! A couple of our more recent CAR-T members @4health4bonnie and @kirkwilliams2049 have had some really encouraging results so far.

I’m sure you’re a teensy bit anxious to see the results of the PET scan and the BMB. So I’ll cross my fingers, eyes and toes for you too! I know how Scanxiety can tax the brain. 😁

It looks like you’re about a month out from the procedure. How are you feeling? Have you noticed a gradual increase in stamina and energy?

anthea29 | @anthea29 | 22 hours ago

Hi-Anthea here. Had CAR-T early June and will have my PET scan and bone marrow biopsy this next week. I had stem cell transplant (my own cells) and large b-cell cancer came back. Praying CAR-T is working! Glad I found this site.

kirkwilliams2049 | @kirkwilliams2049 | Apr 24 4:41pm

Day 30 was when I was declared in remission again after a PET scan. At month 14 my immune system is still not great. I may be going back on ivig infusions again in May. It’s really not all that bad though. I contracted a flu bug from my wife and both of us recovered at the same time.

Anyway, good luck. It’s nothing but up from here! Positivity is the best therapy.

4health4bonnie | @4health4bonnie | Apr 24 1:05pm

In reply to @oregonami58 "Thanks for good report on the older fellow! I am 66 and in good condition so..." + (show)

I am just finishing Car T at ohsu. Dr Desai is my doctor. I am on day 30. I will find out next week if it worked! I am very immune compromised after everything. I have to get growth factor shots every five days. I didnt realize how long it can takefor immunity to return. My care has been excellent.
Bonnie

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?

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 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 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

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!

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