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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@burchfield

Thank you for sharing your husband's experience. My husband receives chemo this week, and then Tcells and hospitalization on Monday.

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I wish him well. While in the hospital he will be carefully monitored and have the attention of his full Care Team at all times. One interesting part of the treatment. They will have your husband answer some simple questions (like identify simple objects, count backwards from 100 by 7, etc.) They also had him write a simple sentence that he chooses. They had him do this about every 4 hours. This showed them any changes in brain function.
Reaction to the treatment varies by person, but the Care Team responds to anything that comes up. Focus on those CAR T-cells attacking his cancer. It is truly amazing. Good luck!

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My husband is 73. He was in remission from Non Hodgkins lymphoma for almost 3 years. Additional treatment was not successful.

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@burchfield

Thank you for sharing your husband's experience. My husband receives chemo this week, and then Tcells and hospitalization on Monday.

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Hi @burchfield. Welcome to Connect. This is such a great forum to be able to speak candidly with other members who are going along the same medical journey. I’m so happy you joined into the conversation with @cdsarmiento. Her husband was 84 at the time of his CAR-T Stem Cell implant and continues to do really well 2+ years later. May I ask the age of your husband? What medical condition brought him to needing the CAR-T therapy?

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@cdsarmiento

He did well with the 3 days of chemo before the infusion, but he had done well with all prior chemo sessions. The worst thing he experienced in the hospital after the infusion was Neuro toxicity. He lost ability to form words or answer questions. Like a stroke. Thankfully, with treatment, he returned to normal over the next day or so. The whole process made him very weak but with Physical Therapy he gradually got stronger. The process is not easy but it killed all cancer cells in his body. Well worth it.

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Thank you for sharing your husband's experience. My husband receives chemo this week, and then Tcells and hospitalization on Monday.

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@loribmt

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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He did well with the 3 days of chemo before the infusion, but he had done well with all prior chemo sessions. The worst thing he experienced in the hospital after the infusion was Neuro toxicity. He lost ability to form words or answer questions. Like a stroke. Thankfully, with treatment, he returned to normal over the next day or so. The whole process made him very weak but with Physical Therapy he gradually got stronger. The process is not easy but it killed all cancer cells in his body. Well worth it.

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@loribmt

Good morning, @ntsimpson. That’s incredible news about the funding and waving protocol for your husband to be able to proceed with CAR-T Stem cell therapy for his CLL. There are new breakthroughs with CAR-T all the time as this field continues to be applied to more forms of cancer through constant research and development.

I agree with you that the word ‘caregiver’ doesn’t reflect the enormity of the challenges faced, sometimes equal or greater than that of the patient, sans the direct medical aspect. My husband and I went through similar with my AML/Bone marrow transplant odyssey! Nothing in our married life of 45 years at that time could have prepared us for the adventure that lay ahead! It’s a challenging roll, to be sure. If you find better term for Labor of love servitude I’d love to hear it! LOL. My husband was rock solid through that really rough year and I watched him age, even though he says ‘he was just fine’.
You and your husband have an equally challenging adventure ahead. He’s on the cutting edge of science with the application of CAR-T for his CLL. It sounds as though you both have a wonderfully positive attitude and know how to find balance in your life. Going through this it’s key to keep that positivity, have a sense of humor and sense of adventure and also being adaptive. We found those 4 traits to be the most beneficial to get us through the worst of times. It all paid off with 5 years being cancer free and feeling as though nothing ever happened.

I know your husband isn’t having his procedure at Mayo, but I do have a helpful guide I received with my bone marrow transplant that might be helpful for both of you. You’ll notice on the first page is a menu. Scroll down to the 3rd section on CAR-T for information about your husband’s upcoming procedure. There are also great tips on caregiving, post transplant care, etc.. https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#CAR-T

Will you have to relocat temporarily while your husband undergoes his treatment or are you near the clinic where this will be taking place?

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No, we are lucky and do not have to relocate. While we have a CLL dr at the Mayo, this was always a second opinion. My husband is a resident of Canada. Thankful that his Mayo dr told us to get on a plane fast in March and go back to Canada. He knew if we stayed in the US we’d go bankrupt, as we pay the Mayo out of pocket. In the US if you have no insurance with any of these severe illnesses you are out of luck, and even with insurance, these companies are often unwilling to fund state-of-the-art treatment. Long live the Canadian healthcare system.

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@ntsimpson

Sorry for my delay in writing. My husband will undergo CAR-T shortly. He will enter a clinical trial in Toronto. CAR-T hasn’t been that successful for CLL, but Princess Margaret Hospital is hoping this trial will offer a better outcome. We had to wait for funding ($1 mill per patient) and a protocol change (no washout period). I imagine he will have the cell collection by the end of this month. In the meantime two drugs are keeping him “healthy” as we wait for the trial. His docs are amazed. The combo hasn’t been used before. Sometimes these breaks in disease progression are about trial and error. My husband is back in the tennis court (age 75) and this makes him happy. Personally, I don’t like the word “caregiver”. As a spouse I think we are as equally affected as the patient. There needs to be a better word! We just went on a week long cruise. We vowed not to discuss my husband’s CLL journey, because you can really get mired in the medical stuff! It was very healthy for both of us!

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Good morning, @ntsimpson. That’s incredible news about the funding and waving protocol for your husband to be able to proceed with CAR-T Stem cell therapy for his CLL. There are new breakthroughs with CAR-T all the time as this field continues to be applied to more forms of cancer through constant research and development.

I agree with you that the word ‘caregiver’ doesn’t reflect the enormity of the challenges faced, sometimes equal or greater than that of the patient, sans the direct medical aspect. My husband and I went through similar with my AML/Bone marrow transplant odyssey! Nothing in our married life of 45 years at that time could have prepared us for the adventure that lay ahead! It’s a challenging roll, to be sure. If you find better term for Labor of love servitude I’d love to hear it! LOL. My husband was rock solid through that really rough year and I watched him age, even though he says ‘he was just fine’.
You and your husband have an equally challenging adventure ahead. He’s on the cutting edge of science with the application of CAR-T for his CLL. It sounds as though you both have a wonderfully positive attitude and know how to find balance in your life. Going through this it’s key to keep that positivity, have a sense of humor and sense of adventure and also being adaptive. We found those 4 traits to be the most beneficial to get us through the worst of times. It all paid off with 5 years being cancer free and feeling as though nothing ever happened.

I know your husband isn’t having his procedure at Mayo, but I do have a helpful guide I received with my bone marrow transplant that might be helpful for both of you. You’ll notice on the first page is a menu. Scroll down to the 3rd section on CAR-T for information about your husband’s upcoming procedure. There are also great tips on caregiving, post transplant care, etc.. https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#CAR-T

Will you have to relocat temporarily while your husband undergoes his treatment or are you near the clinic where this will be taking place?

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Thank you, I just hope/pray that I will respond to my treatment I still have a lot of living to do. I have poor AML with mutation KMT2A. which is not the best AML BMT would have been my best option but I was denied.
Good Luck my friend on this journey.

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@myfablife - Sorry, I should have replied that CarT is not an option for me. I am not sure if it could be an option for someone else. I was told by my Oncologist that Car T is not a treatment for AML.

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