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

Hi can CarTCell work for AML patients..anyone know very interested to know

From my understanding, Chimeric antigen receptor (CAR) T-cell therapies have been approved for the treatment of B-cell malignancies and multiple myeloma, but it’s very challenging to treat myeloid malignancies with this type of therapy. Research on CAR T-cell therapy is progressing rapidly to improve cancer treatment and expand its use to more cancers. So hope may be on the horizon but not quite available yet.
I know you’re desperately trying to find options to treat your AML since the bone marrow transplant isn’t a viable option for you due to your liver transplant and CKD. Those conditions can be further complicated by the rigors of transplant, and vice versa. What medications are you currently taking to keep the AML under control?

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!

Venclexta 50mg everyday
Decitabine infusion every 3weeks 5x a week.
I will f/u with my oncologist soon🙏🏻I am still in remission.
Thanks for all your help.. I am just trying to understand this dx.

Hello @myfablife - I was diagnosed with AML a few months ago. It is my understanding that Car T is not a treatment option for this disease.

@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.

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.

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?

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.

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.