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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 | May 15, 2020
In reply to @ruttgerbay "This really has been a tough time for you! I'm sorry to hear about your dad,..." + (show)
@ruttgerbay

This really has been a tough time for you! I'm sorry to hear about your dad, but if there's a bright spot in all of this, it goes by the term CAR-T. Not to be concerned about the infusion... it's actually interesting. Two nurses handle it...one constantly checking vitals and the other controlling the flow based on the vitals. It's really anticlimactic. They'll keep her and monitor for several hours..as I remember, 4 or so... then if no reaction, away you go back to GOL. Then in a day or two, she'll probably be hospitalized for a while. The hardest part there is the separation. My wife will need the rehab because she was in pretty poor shape when this started, and she's lost a lot of strength while hospitalized. As the doctor told me this morning, "she was in pretty tough shape when she came in -- she hadn't been giving herself enough to eat." Whatever you do, remember what they told you...everyone is different and responds differently. Not to worry... it'll work out and she'll do just fine. Remember---the best in the country are taking care of her!

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Hello @ruttgerbay

I am just checking with you.

Have your wife's Car-T symptoms past?

I hope you are both doing well.

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SunnyD | @sunnyd | Jun 12, 2020
In reply to @grandpabob "Hello @sunnyd Just checking in to see how you are are doing. It is my hope..." + (show)
@grandpabob

Hello @sunnyd

Just checking in to see how you are are doing.

It is my hope that your mom is progressing as expected.
How are you and your mom doing?

I hope that at this time you are able to be physically together which I know is extremely important to you.

Take care.

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Hi,

Mom and I are home. Mom had virtually a clean scan. From a prognosis from weeks to a month in January with the state of her disease and brain tumor, to home with a clear scan! All I can say is, CAR-T works! Its a rough road but the rewards are SO worth it.

We miss dad terribly. We were finally able to lay him to rest June 1st. I know he saw the results from above and is so proud. Mom has come a long way and endured more than anyone I know.

Thank you for checking in. Hope all is well for everyone also 🙏

Dana

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1 reply
Bob, Alumni Mentor | @grandpabob | Jun 12, 2020
In reply to @sunnyd "Hi, Mom and I are home. Mom had virtually a clean scan. From a prognosis from..." + (show)
@sunnyd

Hi,

Mom and I are home. Mom had virtually a clean scan. From a prognosis from weeks to a month in January with the state of her disease and brain tumor, to home with a clear scan! All I can say is, CAR-T works! Its a rough road but the rewards are SO worth it.

We miss dad terribly. We were finally able to lay him to rest June 1st. I know he saw the results from above and is so proud. Mom has come a long way and endured more than anyone I know.

Thank you for checking in. Hope all is well for everyone also 🙏

Dana

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Hello @sunnyd - Dana,

I am so glad to hear that your mother made it home. That is exciting.
There is nothing more comforting than finally getting some news that a treatment is actually working.

I concur the treatment does work, like your mom, I had involvement in the brain as well.

I am so glad you were finally able to address your Dad properly, that must be a relief, though very difficult.

I want to encourage you to continue to reach out on Connect as you see fit.

If, you feel your mom may be looking for some help that you feel can be provided on connect, have her post as well. There are a lot of different groups that she may be able to gain a measure of comfort from.

Thank you for your wishes, take care and be safe.

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1 reply
smokie | @smokie | Feb 24, 2021
In reply to @grandpabob "Hello @sunnyd - Dana, I am so glad to hear that your mother made it home...." + (show)
@grandpabob

Hello @sunnyd - Dana,

I am so glad to hear that your mother made it home. That is exciting.
There is nothing more comforting than finally getting some news that a treatment is actually working.

I concur the treatment does work, like your mom, I had involvement in the brain as well.

I am so glad you were finally able to address your Dad properly, that must be a relief, though very difficult.

I want to encourage you to continue to reach out on Connect as you see fit.

If, you feel your mom may be looking for some help that you feel can be provided on connect, have her post as well. There are a lot of different groups that she may be able to gain a measure of comfort from.

Thank you for your wishes, take care and be safe.

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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.

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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.

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@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?

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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

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1 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?

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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

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1 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

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@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.

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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

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@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

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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.

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