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 Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Bob, Alumni Mentor | @grandpabob | May 31 5:55am

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 8:43am

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 6:58am

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 6:20pm

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 11:58am

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 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.

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)

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

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)

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 5:04pm

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.

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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