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AML (Leukemia) diagnosis after Car T therapy

Posted by Bob, Alumni Mentor @grandpabob, Feb 25 3:49pm

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 CAR-T Cell Therapy Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 25 7:42pm

@grandpabob, this must've been quite a shock to learn of this new diagnosis. I added your question to the Blood Cancers support group as well. I'm tagging fellow members @timt347 @loribmt @edb1123 @lindagi on this discussion. While they don't have your exact story of non-Hodgkin's lymphoma and CAR-T cell therapy, they each have had different treatments for AML.

As I'm sure you've already researched, AML treatment may include chemotherapy, targeted therapy (including monoclonal antibody therapy) or allogeneic stem cell transplantation.

Has your team suggested which treatment might be recommended for you? Is transplant an option given the bone marrow damage?

REPLY
Bob, Alumni Mentor | @grandpabob | Feb 26 1:52pm

@colleenyoung, quite a surprise for sure. I will find out the type of therapy that will be used in the next couple of days. The end goal is transplant, remission is the first goal.
Thank you for the questions.

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 26 4:52pm

@grandpabob! I’m so sorry to hear about the change in your health. You and I met in Connect about the time I was one year out from my AML/bone marrow transplant, 4 years ago. You were fairly new into your Car T transplant!
I’m more than happy to talk to you about this new ‘bump in the road’ you’re facing.
Treatment will depend on what your is doctor is finding as the cause. They will most likely run some genetic testing to see if you have an acquired mutation that is causing the changes in cell production. That will dictate treatment.

I had the standard induction chemo and consolidation chemo for AML which brought me to remission. After that, I did have an Allogenic (donor cells) bone marrow transplant, which is what you’ll be having. Since I had my adventure 5 years ago, there have been newer AML treatments introduced, so maybe that portion has changed. But the transplant will be similar to what you had with Cart T. I’m more than happy to walk you through whatever you need! I’ll be following along with you! Hugs, Lori.

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1 reply
Bob, Alumni Mentor | @grandpabob | Feb 27 5:04pm
In reply to @loribmt "@grandpabob! I’m so sorry to hear about the change in your health. You and I met..." + (show)
@loribmt

@grandpabob! I’m so sorry to hear about the change in your health. You and I met in Connect about the time I was one year out from my AML/bone marrow transplant, 4 years ago. You were fairly new into your Car T transplant!
I’m more than happy to talk to you about this new ‘bump in the road’ you’re facing.
Treatment will depend on what your is doctor is finding as the cause. They will most likely run some genetic testing to see if you have an acquired mutation that is causing the changes in cell production. That will dictate treatment.

I had the standard induction chemo and consolidation chemo for AML which brought me to remission. After that, I did have an Allogenic (donor cells) bone marrow transplant, which is what you’ll be having. Since I had my adventure 5 years ago, there have been newer AML treatments introduced, so maybe that portion has changed. But the transplant will be similar to what you had with Cart T. I’m more than happy to walk you through whatever you need! I’ll be following along with you! Hugs, Lori.

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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.

REPLY
2 replies
timt347 | @timt347 | Feb 28 7:56am
In reply to @grandpabob "Hello @loribmt, thank you for the wishes and the information you are able to share. I..." + (show)
@grandpabob

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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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.

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Mentor
Lori, Volunteer Mentor | @loribmt | Mar 14 2:21pm
In reply to @grandpabob "Hello @loribmt, thank you for the wishes and the information you are able to share. I..." + (show)
@grandpabob

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.

Jump to this post

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

REPLY
Bob, Alumni Mentor | @grandpabob | Mar 15 11:20am

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.

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