1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

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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cdsarmiento | @cdsarmiento | 15 hours ago

My husband is 86 years old and had CAR T-cell therapy (December 2022) at age 84. He did very well and has been in remission ever since…no sign of Lymphoma anywhere. Go for it!

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Moderator
Colleen Young, Connect Director | @colleenyoung | 1 day ago
In reply to @brayton "Thank you. Would like to talk to you on the phone. My name is Brayton. I..." + (show)
@brayton

Thank you.
Would like to talk to you on the phone. My name is Brayton. I am 70. Car T is last chance after chemo burn out.
I am a fighter.

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Hi @brayton, please note that your phone number has been removed. It is recommended to use the secure private message function and not post personal contact information on the public forum.

However, I'd also like to point out the benefit of sharing here in the support group where you will receive support and information from several people and we can all learn from each other.

Brayton, when do you start CAR-T cell therapy?

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brayton | @brayton | 1 day ago
In reply to @grandpabob "Hello Joe - I was 62 when I had the treatment. Prepping for Cart was not..." + (show)
@grandpabob

Hello Joe - I was 62 when I had the treatment. Prepping for Cart was not particularly difficult, having all the pre therapy tests was quite typical, the apheresis process (Took about 3 hours) to harvest the cells was very straight forward. I underwent 3 sessions of chemotherapy prior to the modified T Cell infusion. Once the cells were modified, the infusion of the new T – cells was very simple. It was the second day after that that I started to encounter side effects. I had pretty much all the published side effects that we were told about. Neuro toxicity, Cytokine Release Syndrome (CRS), slow heart rate, high fever. I spent 2 weeks in hospital one of them in the ICU. I encourage you to take note of all the side effects that are described by your practitioner. I was extremely weak for some time after I left the hospital. Though I encountered many of the side effects, the treatment did save my life.

I hope you find this information helpful, be cognizant of the fact that side effects and their degree can be different for everyone.

When will the pre treatment process start, Joe?

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Thank you.
Would like to talk to you on the phone. My name is Brayton. I am 70. Car T is last chance after chemo burn out.
I am a fighter.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | 2 days ago
In reply to @ntsimpson "My husband has CLL. He has just rejected a fourth line treatment." + (show)
@ntsimpson

My husband has CLL. He has just rejected a fourth line treatment.

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Hi @ntsimpson, I just wanted to check in with you to see how your husband is doing. I know rejecting treatment is a huge personal decision that impacts not only your husband, but you and your family as well. Has your husband reconsidered? Has his doctor been able to offer another option for him? And…how are you coping as the caregiver?

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ntsimpson | @ntsimpson | Apr 7 9:24am
In reply to @loribmt "While you’re waiting for other members who have experience with CAR T thereapy to respond, I’d..." + (show)
@loribmt

While you’re waiting for other members who have experience with CAR T thereapy to respond, I’d like to welcome to Connect, @ntsimpson. Are there any specific questions that you have? What illness has led your husband to be needing CAR T?

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My husband has CLL. He has just rejected a fourth line treatment.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 3 7:31am
In reply to @ntsimpson "Hello Joe, I am brand new to this site. I am reading all the most up..." + (show)
@ntsimpson

Hello Joe,
I am brand new to this site. I am reading all the most up to date posts. Did you undergo CAR T? And, how are you now? My husband will be taking part in a CAR T clinical trial soon.
Thank you,
Nancy Simpson

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While you’re waiting for other members who have experience with CAR T thereapy to respond, I’d like to welcome to Connect, @ntsimpson. Are there any specific questions that you have? What illness has led your husband to be needing CAR T?

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1 reply
ntsimpson | @ntsimpson | Apr 3 7:05am
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

Jump to this post

Hello Joe,
I am brand new to this site. I am reading all the most up to date posts. Did you undergo CAR T? And, how are you now? My husband will be taking part in a CAR T clinical trial soon.
Thank you,
Nancy Simpson

REPLY
1 reply
Bob, Alumni Mentor | @grandpabob | Jan 13, 2023
In reply to @taylaroleary "My husband was diagnosed with multiple myeloma stage 3 09/2020. His oncologist said his was the..." + (show)
@taylaroleary

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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Hello @taylaroleary - I am sorry for your loss, so glad to hear that Car T added time and comfort for your family. It is so unfortunate that medications and treatments are not always 100% effective.

Is your family close by for support

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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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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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