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CAR-T - Looking for statistical data for over 70 age group

Posted by joefmsi2020 @joefmsi2020, Oct 18, 2022

After being told this January that my cancer was back (after 20 years of remission) I have undergone several months of chemo. Unfortunately, the cancer has been resistant but my oncologist is suggesting CAR-T. I have tried to find out if results are good for my age group but cannot find much statistically. I will be meeting with the oncology group soon (after having results from last scan). Does anyone know of any statistical data out there for over 70 age group? Thanks in advance.

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lmn | @lmn | Oct 24, 2022

No, he will be getting it at Medical University of South Carolina. I’m very hopeful!

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1 reply
lmn | @lmn | Oct 24, 2022
In reply to @joefmsi2020 "I don’t know of an online “education” program. I do know there are some basic outlines..." + (show)
@joefmsi2020

I don’t know of an online “education” program. I do know there are some basic outlines and videos that explain the process.

One that was helpful to me was: lls.org/patient-education-videos/car-t-cell-therapy

There is another site for a specific CAR T treatment. As I understand it, there are different versions of CAR T. This is the one I will be using for my condition:

breyanzi.com/

Hope this helps.

Best of luck.o

Joe

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Thank you so much!!
I want to be prepared and understand everything!! I will definitely check out the site!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2022
In reply to @lmn "No, he will be getting it at Medical University of South Carolina. I’m very hopeful!" + (show)
@lmn

No, he will be getting it at Medical University of South Carolina. I’m very hopeful!

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MUSC, is a great facility. I asked because Mayo Clinic offers learning sessions prior to CAR-T therapy for patients and their caregivers. They also have one-on-one sessions with a specialized oncology social worker. You may inquire if MUSC offers similar pre-education.

In the meantime, continue to ask questions here. It also helps to learn from other caregivers who have been there. Is there anything that weighing on your mind that you'd like to know about or prepare for?

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raemark | @raemark | Nov 2, 2022

I had CAR-10 when I was 67. I'm now 69. I assume I'm not a CAR-T candidate because I've already had it. Is that correct?

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1 reply
Bob, Alumni Mentor | @grandpabob | Nov 3, 2022

Hello @raemark - I would suggest that you ask your health care team this question. There was nothing to indicate in my searches that a person could not undergo the treatment a second time, though I did not find anything that promoted a second treatment.

I see it has been some time since you last posted, how are you doing?

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1 reply
Bob, Alumni Mentor | @grandpabob | Nov 3, 2022
In reply to @joefmsi2020 "Bob, Thank you for the information. My biggest concern is the side affects you refer to...." + (show)
@joefmsi2020

Bob,

Thank you for the information. My biggest concern is the side affects you refer to. Seem as though that is the biggest risk and concern.

With regard to when it would all start, the doctors are telling me that Nov. 7th would be the first day of the actual process (harvesting). Other than that the schedule has not been finalized at this point. “Team Joe” and I will be going to the CAR T education process on 10/26.

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Hello Joe, I just want to drop you a note and wish you well on Monday as you start your process with CAR T. I will be thinking about you on Monday as I found this first step exciting. Wishing you the best!!

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1 reply
joefmsi2020 | @joefmsi2020 | Nov 4, 2022
In reply to @grandpabob "Hello Joe, I just want to drop you a note and wish you well on Monday..." + (show)
@grandpabob

Hello Joe, I just want to drop you a note and wish you well on Monday as you start your process with CAR T. I will be thinking about you on Monday as I found this first step exciting. Wishing you the best!!

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Thank you Bob

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raemark | @raemark | Nov 5, 2022
In reply to @grandpabob "Hello @raemark - I would suggest that you ask your health care team this question. There..." + (show)
@grandpabob

Hello @raemark - I would suggest that you ask your health care team this question. There was nothing to indicate in my searches that a person could not undergo the treatment a second time, though I did not find anything that promoted a second treatment.

I see it has been some time since you last posted, how are you doing?

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Thanks for your message. That's good counsel you've given; thanks. We meet with a radiologist this coming week at Mayo. Thanks again. Mark W

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taylaroleary | @taylaroleary | Jan 11, 2023

My husband was diagnosed with multiple myeloma stage 3 09/2020. His oncologist said his was the most aggressive myeloma she has ever seen. He would likely get 2 years vs the 5 year survival rate. CarT did work and gave him the best 4 months we got to take our last vacation with our kids he was only 47. But it did work and worked fast but his cancer was just too strong. He fought hard . I wish u the best but car t cell def worked the only question is how long, but it gave him an amazing healthy 4 months and we were in the hospital 8 out of the 13 months

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1 reply
taylaroleary | @taylaroleary | Jan 11, 2023
In reply to @raemark "I had CAR-10 when I was 67. I'm now 69. I assume I'm not a CAR-T..." + (show)
@raemark

I had CAR-10 when I was 67. I'm now 69. I assume I'm not a CAR-T candidate because I've already had it. Is that correct?

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that is true from what my husband’s oncologist said once the cells are in there they will continue to work or the cancer will eventually stop them from
working .
CAR T-cell therapy is a “living drug” and intended to remain in the body fighting cancer. For most people, CAR T is a one-time treatment and the T cells remain in the body for months and years.

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