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CAR-T - Looking for statistical data for over 70 age group
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jul 9 7:37pm | Replies (45)Comment receiving replies
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?