AML (Leukemia) diagnosis after Car T therapy

Posted by Bob, Alumni Mentor @grandpabob, Feb 25, 2024

I received Car T therapy for Non Hodgkins Lymphoma in 2018. The therapy was very successful with the complete eradication of the disease. Recently I have been diagnosed with AML (Luekemia). I was advised the likely reason of this unfortunate diagnosis, is the bone marrow has been damaged by the high doses of Chemo Drugs I was administered, prior to becoming eligible to receive the Car T treatment.

I would appreciate hearing from anyone who may had a similar.
experience.

If you are familiar with this, how was the AML treated?
I appreciate any insight you may be able to share.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

smokie | @smokie | Jul 6 9:39pm

Dear Grandpabob
I was thinking of you and found this post.
Praying for your recovery.
Greg is still doing well.
Regards Barb

Bob, Alumni Mentor | @grandpabob | May 31, 2024

Good morning Lori, I am still undergoing maintenance treatment. Where I started with a twenty eight day cycle with treatments every day for two weeks with a two week recovery period, I am currently on a forty two day cycle, seven days of treatment with a 36 day recovery period.

Lori, Volunteer Mentor | @loribmt | May 28, 2024

In reply to @grandpabob "Hello @loribmt, @colleenyoung - I appreciate the thoughts and reaching out to check on me. I..." + (show)

Good morning, Bob. Sounds like you’re rebounding nicely from the AML treatments and hit the all-encouraging remission point! That’s fantastic news! I’m sure you did a lot of soul searching about whether to go ahead with the transplant or not. Since you’ve already been through CAR-T therapy, you’re plenty familiar with that road to recovery, so I can certainly respect your decision. I’m so happy you’re doing well and feeling so much better. Are you on a maintenance drug?

Bob, Alumni Mentor | @grandpabob | May 27, 2024

In reply to @loribmt "I was just thinking the same thing, @colleenyoung. @grandpabob, seen you for a few months. How..." + (show)

Hello @loribmt, @colleenyoung - I appreciate the thoughts and reaching out to check on me. I am doing reallly good, getting back into the swing of things. The AML is in remission at this point. All the blood counts are moving in the correct direction. Lori, I have decided not to go ahead with a BMT, I am not prepared to go through recovery and all the high risks that go along with it. So, I am going to power through this with the hope that this nasty thing will be fair to me. I hope you folks are all doing well, thanks again for checking in all the best to you all, and gosh check in again as I will likely forget to do so.

Lori, Volunteer Mentor | @loribmt | May 25, 2024

In reply to @colleenyoung "Thinking of you, @grandpabob." + (show)

I was just thinking the same thing, @colleenyoung. @grandpabob, seen you for a few months. How are you doing with your treatments for AML. Are you in remission and heading to transplant anytime soon? Sure wishing you all the best. I guess some of this is familar to you but still a lot to go through. Let me know if I can help in any way. Sending a hug.

Colleen Young, Connect Director | @colleenyoung | May 25, 2024

In reply to @grandpabob "Hi Lori, thank you for checking in. I have started treatment, (not sure of the proper..." + (show)

Thinking of you, @grandpabob.

Bob, Alumni Mentor | @grandpabob | Mar 15, 2024

Hi Lori, thank you for checking in. I have started treatment, (not sure of the proper name). I am on a 2 week cycle of 2 types of Chemotherapy, one type I take orally, the other is inject subcutaneously.
The goal is remission then a bone marrow transplant.
Take care and thank you once again.

Lori, Volunteer Mentor | @loribmt | Mar 14, 2024

In reply to @grandpabob "Hello @loribmt, thank you for the wishes and the information you are able to share. I..." + (show)

Hi Bob, just checking in with you. Have you had a consult/treatment plan?

timt347 | @timt347 | Feb 28, 2024

In reply to @grandpabob "Hello @loribmt, thank you for the wishes and the information you are able to share. I..." + (show)

I am glad you will be finding out more soon about treatment.

I don' have much in the way of specific information to offer right now. I had chemo (more than once) followed by a stem cell transplant.

Every case is different, so hang in there.

Bob, Alumni Mentor | @grandpabob | Feb 27, 2024

In reply to @loribmt "@grandpabob! I’m so sorry to hear about the change in your health. You and I met..." + (show)

Hello @loribmt, thank you for the wishes and the information you are able to share. I will find out soon how the treatment will be managed soon. I certainly may reach out for your personal insight.
Take Care.

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