1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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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 | Jul 12, 2021
In reply to @panamaj "Thank you. I will stay connected. Hoping someone has some experience with CAR T trials for..." + (show)
@panamaj

Thank you. I will stay connected. Hoping someone has some experience with CAR T trials for RCC. Thx!

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@panamaj - Hello Marsha, I was just dropping in to say hello as it has been some time since we last communicated.

Did the Aspergillosis get treated sufficiently that you can now be considered a Car T Candidate? I hope so.

Take care.
Bob

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 29, 2021
In reply to @panamaj "I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell..." + (show)
@panamaj

I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

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@panamaj, what great news that CAR-T is now being trialled for treatment of renal cell carcinoma.

As you deal with treating the lung infection aspergillosis, you may be interested in connecting with members in these discussions
- Aspergillosis https://connect.mayoclinic.org/discussion/aspergillosis-1/
- Aspergillus with MAC https://connect.mayoclinic.org/discussion/aspergillus-with-mac/

What questions do you have as you prepare for CAR-T therapy?

REPLY
panamaj | @panamaj | Mar 29, 2021
In reply to @grandpabob "Hello @panamaj - I see this is your first post. Welcome to Mayo Clinic Connect, an..." + (show)
@grandpabob

Hello @panamaj - I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.

I see you are already following the cancer group, good for you.

Thank you for sharing your story. It is great to see that Car -T is being considered as a treatment for more cancers at this time. Just a few years ago the criteria was even more stringent.

I am excited for you that Car T may be a treatment option. Feel free to ask your questions about the Car T experience, I will help where I can and I am sure others will as well.

Will you stay connected so we can continue to offer you a place to to talk?

Take care.
Bob

Jump to this post

Thank you. I will stay connected. Hoping someone has some experience with CAR T trials for RCC. Thx!

REPLY
1 reply
Bob, Alumni Mentor | @grandpabob | Mar 27, 2021
In reply to @panamaj "I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell..." + (show)
@panamaj

I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

Jump to this post

Hello @panamaj - I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We are not medical professionals who can offer medical advice.

I see you are already following the cancer group, good for you.

Thank you for sharing your story. It is great to see that Car -T is being considered as a treatment for more cancers at this time. Just a few years ago the criteria was even more stringent.

I am excited for you that Car T may be a treatment option. Feel free to ask your questions about the Car T experience, I will help where I can and I am sure others will as well.

Will you stay connected so we can continue to offer you a place to to talk?

Take care.
Bob

REPLY
1 reply
panamaj | @panamaj | Mar 27, 2021

I am Marsha and being considered for a CAR-T experimental trial for stage 4 renal cell carcinoma. My first treatment was with immunotherapy (2 drugs) started in Nov 2019 & that caused me to get Gillian Barre Syndrome (6 weeks in the hospital). I went on Cabometyx for a year & it stabilized my cancer until my last check up this month. I have developed Aspergillosis, a fungus in my lungs & so I cannot be considered for CAR-T until my infection is fully treated. I’ve been on anti-fungal meds since October ( on & off for 5 months). I am starting a treatment of Lenvima & Afinitor this week and until I can try to get into the CAR-T trial; hopefully by summer. So, this discussion is very helpful. Thank you for including me.

REPLY
2 replies
Bob, Alumni Mentor | @grandpabob | Feb 25, 2021
In reply to @smokie "Thanks for your answer, Bob. Greg’s Dr said that the Mayo was recommending the vaccine. So..." + (show)
@smokie

Thanks for your answer, Bob. Greg’s Dr said that the Mayo was recommending the vaccine.
So glad that your recovery from shingles was good. Greg got the vaccine- but wish it had been before that terrible bout with shingles.
I thank God every day for the Mayo and CAR T
Cell Theraphy! Take care. Barb

Jump to this post

@smokie - You are welcome Barb. It does appear that the doctors are on the same page with this one. Now we just have to be patient until our brackets queue us up for the vaccine.

I thank the Scientific and Health Care community everyday for Car T as well. A gift for sure.

It has been great hearing from you again, keep in touch.
Bob

REPLY
Bob, Alumni Mentor | @grandpabob | Feb 25, 2021
In reply to @tanis "Hello. I had CART in June of 2018. My immunity was very compromised. I am currently..." + (show)
@tanis

Hello. I had CART in June of 2018. My immunity was very compromised. I am currently receiving IviG infusions and I have been told to get the vaccine as soon as I am offered an appointment

Jump to this post

@tanis - Thanks for your reply, it is comforting to hear that the doctors are providing the same guidance on the vaccine.I am happy to hear you are receiving IVIG infusions to build up your immunity levels.

What is the frequency that you receive them?

Good to hear from you, take care.

REPLY
smokie | @smokie | Feb 24, 2021
In reply to @grandpabob "@smokie - Hello Barb, so glad to hear from you and that you found us again..." + (show)
@grandpabob

@smokie - Hello Barb, so glad to hear from you and that you found us again on Connect. Good to hear that Greg is doing well.

I have not had any direct contact from the team at Mayo on this. I had an appointment with my Oncologist/Hematologist last week. The answer I received when I asked was that those currently returning from treatment were told that they should have the Covid 19 vaccine anytime after 6 months post treatment. She said I should absolutely get the vaccine when it becomes available.

Did Greg ask his Doctor about it? What was he told?

On another note, I, like Greg, contracted Shingles, thankfully I was vaccinated so the symptoms were mild and went away quickly.

Can anyone else who has undergone Car-T treatment share what you have been told about receiving the Covid 19 vaccine?

Jump to this post

Thanks for your answer, Bob. Greg’s Dr said that the Mayo was recommending the vaccine.
So glad that your recovery from shingles was good. Greg got the vaccine- but wish it had been before that terrible bout with shingles.
I thank God every day for the Mayo and CAR T
Cell Theraphy! Take care. Barb

REPLY
1 reply
tanis | @tanis | Feb 24, 2021

Hello. I had CART in June of 2018. My immunity was very compromised. I am currently receiving IviG infusions and I have been told to get the vaccine as soon as I am offered an appointment

REPLY
1 reply
Bob, Alumni Mentor | @grandpabob | Feb 24, 2021
In reply to @smokie "Hi Bob - this is Barb - Greg (Winnipeg) Mum. I lost you and had trouble..." + (show)
@smokie

Hi Bob - this is Barb - Greg (Winnipeg) Mum.
I lost you and had trouble getting to this site.
Greg doing well. Had appt this morning. Wondered if you had info from the Mayo on effect that the Covid 19 shot has on already engineered T Cells.

Jump to this post

@smokie - Hello Barb, so glad to hear from you and that you found us again on Connect. Good to hear that Greg is doing well.

I have not had any direct contact from the team at Mayo on this. I had an appointment with my Oncologist/Hematologist last week. The answer I received when I asked was that those currently returning from treatment were told that they should have the Covid 19 vaccine anytime after 6 months post treatment. She said I should absolutely get the vaccine when it becomes available.

Did Greg ask his Doctor about it? What was he told?

On another note, I, like Greg, contracted Shingles, thankfully I was vaccinated so the symptoms were mild and went away quickly.

Can anyone else who has undergone Car-T treatment share what you have been told about receiving the Covid 19 vaccine?

REPLY
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