GVHD in liver post BMT for AML

Hi @38626sunny and welcome to Connect. We’ve moved your discussion into our BMT/SCT/CAR-T support group so you’ll be able to connect with fellow members who have also had a bone marrow transplant. Many whom have also had AML.

You’ve had quite a medical journey over the past year I suspect, with AML and the subsequent bone marrow transplant. (BMT). I was there myself 6 years ago and grateful for the 2nd chance at life. But it can come with a few challenges here and there.

I’m sorry to read that you’re dealing with some gvhd of the liver and high ferritin levels. I read in one of your other replies that you developed this after weaning off tacro. It’s not uncommon for gvhd symptoms to first appear around that time. Sometimes it’s necessary to take steroids for a while or other anti-inflammatory meds, depending on the gvhd, such as Jakafi, rituximab, infliximab or in my case, my doctor put me back on low-dose tacro for 2.5 years.
Have you had a liver biopsy? What has your doctor offered as treatment for your gvhd?

Hi @38626sunny
I am currently experiencing just that. My BMT was April 2024 and this is the 2nd time with high iron. No real symptoms though.

Welcome to Connect @jmike65. Congratulations on your BMT…you’ve already had your first Re-birthday Cell-ebration! That’s a big milestone.
What does your transplant doctor say about your high iron? Do you have any chronic gvhd issues?

Hi @loribmt ,
Pretty much what you mentioned above. And, I actually love prednisone for the added energy I get. Thanks for the congrats.

Are you going to make me drag your story out of you?😂
It would be great if you’d like to share more about your journey…such as; What was your underlying cause for requiring a BMT? Is your gvhd involvement limited to your liver? How long have you been on energy pills…I mean the prednisone?

Lol, thanks @loribmt. In Nov of 23 I was diagnosed with AML and spent 7 weeks at Baptist with 2 rounds of chemo. And then went to Mayo in April of 24 for my BMT from one of my sisters, who was a 100% match. I went to hell and back, and 5 weeks later came home in full remission. It was really slow recovery at first, but now things are pretty normal. I'm dealing with the liver GVHD, but not too big of a deal so far, 🤞.

Hi @jmike65 Let me officially welcome you to the Connect BMT posse, as I lovingly to refer to our growing list of members who have had an allogeneic transplant for our various reasons. It can truly be a 2nd chance at life and the potential means to having a cure.

I’m so happy to hear you’re doing well and in full remission…and fully appreciate what you’ve gone through to get to this point with your AML/BMT. Hell and back is pretty accurate. You and I share a similar story with AML and the subsequent transplant at Mayo.(Rochester) Not having any siblings to match I had an unrelated donor. This was 6 years ago, fully recovered and feeling fab!

Please feel free to jump into any conversations where you might be able to share your experiences, stories, journey with fellow members. I never set out to be a mentor but found the value in having been able to speak with someone who had gone through the same odyssey…who walked the same walk. It can be so helpful to others about to embark on this healing adventure. Our input can boost moral and often become a lifeline of hope. ☺️

There are a couple of current conversations where you might like to share more of your AML or BMT stories. These two links below come to mind… but there are plenty more in the Blood Cancer support group as well as this BMT support group.

~My bone marrow transplant story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~~~~~

~Snapshots of hope! Life on the other side of transplant
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
At which Mayo campus did you have your transplant?