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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@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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@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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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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@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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@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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@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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@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.

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@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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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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@cdsarmiento

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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Hello. My Lymphoma is Stage II nodular sclerosing Hodgkin which is refractory but stable. It was diagnosed in 2020, so I have been in treatment for four years now. Currently I am being infused with Nivolumab every two weeks and bendamustine every four weeks. Should this regimen either fail or for other reasons need to be changed, I am very interested in CAR-T cell therapy. At age 84, your post gives me encouragement that this may work for me if needed. Thank you for your post and I hope to hear updates!

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@cdsarmiento

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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Welcome to Connect, @cdsarmiento. Thank you so much for sharing your husband’s experience with his CAR-T therapy adventure at the age of 84. This is really reassuring and encouraging for anyone who maybe considering the procedure. It’s not an easy journey but well worth the effort to have such a positive outcome and I’m so happy for your husband that he’s doing so well.
Did he have any issues with the pre-conditioning chemo or after the infusion of cells?

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