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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.

Bob, Alumni Mentor | @grandpabob | Oct 11, 2019
In reply to @annmillercarr "Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T..." + (show)
@annmillercarr

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system--which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since--so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

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I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

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Ann | @annmillercarr | Oct 11, 2019

Dave just had another regularly scheduled checkup at Mayo Hematology. He is cancer-free since the CAR-T in May-June 2018. But he's still immunosuppressed, as his pneumonia in January really affected his immune system--which hadn't really rebounded from CAR-T, of course. But RBC and platelets are back to normal range and his WBC, neutrophils, etc. counts are improving as time goes on. He hasn't been sick or had any infections since--so that is good. But since he hasn't had any repeat infections, he is not eligible for any gamma globulin protocol. But we are glad that he is feeling fine and continues to work. The big change we have is that he has a new job and we have relocated. A word of warning to other cancer patients/those with serious illnesses: It can be against the law for your employer to fire you because you've been sick, and, particularly, you've been increasing the company's health insurance rates. But what they can do is "eliminate your position" and downsize you. The company may give you severance or other benefits for a while to, well, CTA is the usual acronym. Then the company changes the name of your position and hires someone else to do the same job you've been doing. It's legal. Of course, then the person who's been downsized my not be able to find another job, afford the COBRA; or, if another job is found, have health insurance as comprehensive as what he/she had at the former job. But sometimes things do work out even after things like this happen. The moving process is never easy or smooth; finding a new house, going through the buying the new one/selling the old house, dealing with all the packing and moving. And it always it takes several months for all the boxes to be unpacked and updates are finished (like painting walls!). But one gets through it. Things could be worse.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11, 2019
In reply to @smokie "Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He..." + (show)
@smokie

Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

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What a relief that must be for you, @smokie. Fatigue is a reality for many who have had cancer treatment, during and longer term. Members are talking about cancer-related fatigue in the Managing Symptoms group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/) in this discussion:

- Fatigue and cancer treatment https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/
You may wish to read some of the coping strategies members share.

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smokie | @smokie | Oct 11, 2019
In reply to @smokie "He is doing pretty well. Still gets tired though. Not the worst thing. He is having..." + (show)
@smokie

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

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Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 11, 2019

Hi @greta_k @annmillercarr @raemark2010 @raemark @valerie912 @grannybrenda @kjmahoney @smokie
I thought it was high time that I checked in with all of you. First a little news.

This week the Connect Member Spotlight features fellow CAR-T cell therapy member @grandpabob. Get to know a bit more about Bob, what brought him to Connect, how he finds balance in life and some unexpected things too.
- Don’t Expect What You Don’t Inspect : Meet @grandpabob https://connect.mayoclinic.org/page/about-connect/newsfeed-post/dont-expect-what-you-dont-inspect-meet-grandpabob/

See all Member Spotlights on Connect: https://connect.mayoclinic.org/page/about-connect/

Now I'd like to get an update from you.
@smokie, how is your son doing? And you?
@raemark2010 and @raemark Have you returned to Africa?
@greta_k how's Graydon? How are you?
@valerie912 how are things for both you, Dave and the little one?
@annmillercarr any news from you?

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smokie | @smokie | Apr 29, 2019

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 29, 2019
In reply to @smokie "My name is Barb and my son Greg had a CAR T Cell Transplant in Aug..." + (show)
@smokie

My name is Barb and my son Greg had a CAR T Cell Transplant in Aug of 2018 for large BCell lymphoma. He has done well except for immunoglobulin being low. He had a reaction to the infusion and is giving it to himself weekly in needles in the stomach. Just in the last 3 weeks, he has become unusually tired. Has anyone else experienced this at this stage.

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Hi @smokie, I just wanted to check in. How is your son doing?

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Ann | @annmillercarr | Apr 18, 2019
In reply to @smokie "My son was a CAR T cell lymphoma patient Sept 2018. 7 months later he is..." + (show)
@smokie

My son was a CAR T cell lymphoma patient Sept 2018. 7 months later he is extremely tired. More so than he was a month ago. Did this happen to your husband?

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Has he discussed this with his hematologist/oncologist, either at home or at Mayo's?

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smokie | @smokie | Apr 17, 2019
In reply to @grandpabob "Hello this is Bob, i had my infusion in August of 2017 for large B cell..." + (show)
@grandpabob

Hello this is Bob, i had my infusion in August of 2017 for large B cell as well. I have not experienced this at this point.

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Thanks so much for replying! Going to check with the Dr.

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Bob, Alumni Mentor | @grandpabob | Apr 17, 2019

Hello this is Bob, i had my infusion in August of 2017 for large B cell as well. I have not experienced this at this point.

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