1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
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Anyone experienced Bone Marrow Transplant with TP53 mutation?

Posted by Steve1958 @alohasteve, Aug 13, 2023

After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for my enlarged spleen with no known side effects, so far. The kicker is the diagnosis of TP53 gene mutations added to my JAK2 mutation, which has also copied itself. I am scheduled for a Bone Marrow/Stem Cell Transplant from a top hospital next month. I recently got a second opinion from another top institution. Both agree that the transplant is necessary, but they differ on their recommended conditioning regimen (chemo/radiation). One suggests a more aggressive chemotherapy, that includes Fludarabine & Melphalan, the other Fludarabine. Melphalan is known to be more toxic with more potential side effects. Both doctors told me that currently, there is no known treatment for the TP53 gene mutation. The TP53 gene mutation is a more aggressive mutation and is known to comeback, even after a transplant. I've done plenty of research and feel like I'm in good hands with my doctor. But, I'm interested to see if anyone else has experienced a similar situation with a TP53 gene mutation and any experience with Melphalan? Stem Cell Transplants? BTW...the crazy thing is, other than a little fatigue, I stay active, look & feel healthy (I'm 65). It is all very surreal, considering my diagnosis. Best to everyone dealing with these blood diseases. Carpe Diem!

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

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dirtycowgirl | @dirtycowgirl | Aug 4, 2025
In reply to @alohasteve "Lori, Thank you so much for taking the time to reply. I have been looking at..." + (show)
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Lori, Thank you so much for taking the time to reply. I have been looking at Mayo Clinic Connect for a couple months, but had never posted anything, until this week. I've seen a number of your posts on BMT/SCT. Your words are encouraging and helpful to many, including me.

The great news is that I have a designated donor with a 12/12 match. Apparently, the donor had a scheduling conflict, so my SCT has been pushed out another month. My disease hasn't progressed to AML, so the doctor isn't concerned with the additional month.

Thanks for the offer to reach out, should I have additional questions. I just may take you up on that. Carpe Diem! Steve

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12/12 match? How high does it go? Do you have any other info on this topic? I have 10/10 donor matches which I was excited about thinking 10 was the highest able match but it goes past 10? Yikes...

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Lori, Volunteer Mentor | @loribmt | Aug 5, 2025
In reply to @dirtycowgirl "12/12 match? How high does it go? Do you have any other info on this topic?..." + (show)
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12/12 match? How high does it go? Do you have any other info on this topic? I have 10/10 donor matches which I was excited about thinking 10 was the highest able match but it goes past 10? Yikes...

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Hi @dirtycowgirl, No need to panic with a 10/10 HLA match for your BMT. Human Leukocyte Antigen (HLA) genes are crucial for the immune system's ability to distinguish between self and non-self cells. In a allogeneic stem cell transplant, the goal is to find a donor with an HLA type that closely matches the recipients to minimize the risk of complications like graft-versus-host disease (GVHD) and graft rejection. (Blood type doesn’t matter)

For HLA matching, doctors look at up to 12 different markers on your DNA. This makes finding a match much harder because there are millions of possible combinations, and usually doctors want to match eight to ten of those 12 markers.
While 12/12 is considered an optimum match, from my understanding, 10/10 or even 8/8 are considered great compromises when a 12/12 match isn’t available. I had a 10/10 match and very happy with my current situation being 6 years post transplant.

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davi0937 | @davi0937 | Aug 6, 2025
In reply to @loribmt "Hi @dirtycowgirl, No need to panic with a 10/10 HLA match for your BMT. Human Leukocyte..." + (show)
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Hi @dirtycowgirl, No need to panic with a 10/10 HLA match for your BMT. Human Leukocyte Antigen (HLA) genes are crucial for the immune system's ability to distinguish between self and non-self cells. In a allogeneic stem cell transplant, the goal is to find a donor with an HLA type that closely matches the recipients to minimize the risk of complications like graft-versus-host disease (GVHD) and graft rejection. (Blood type doesn’t matter)

For HLA matching, doctors look at up to 12 different markers on your DNA. This makes finding a match much harder because there are millions of possible combinations, and usually doctors want to match eight to ten of those 12 markers.
While 12/12 is considered an optimum match, from my understanding, 10/10 or even 8/8 are considered great compromises when a 12/12 match isn’t available. I had a 10/10 match and very happy with my current situation being 6 years post transplant.

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I have also heard from the BMT Physician at Mayo that age of the donor is also important. So if 8/8 and 20 years old vs 10/10 and 40 years old. Let me know if you have heard otherwise. They did a review of my HLA and only found 4 donors for me- with 10/10 match. He took one out because that person was older.

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Lori, Volunteer Mentor | @loribmt | Aug 7, 2025
In reply to @davi0937 "I have also heard from the BMT Physician at Mayo that age of the donor is..." + (show)
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I have also heard from the BMT Physician at Mayo that age of the donor is also important. So if 8/8 and 20 years old vs 10/10 and 40 years old. Let me know if you have heard otherwise. They did a review of my HLA and only found 4 donors for me- with 10/10 match. He took one out because that person was older.

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Hi @davi0937, If available, from my understanding, a transplant doctor will tend to choose a younger stem cell donor. Older cells may show signs of aging, including DNA damage and telomere shortening, which can impair their function and regenerative capabilities. But that doesn’t mean older cells can’t or shouldn’t be used in an effort to give someone a 2nd chance at life. ☺️

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davi0937 | @davi0937 | Aug 7, 2025
In reply to @loribmt "Hi @davi0937, If available, from my understanding, a transplant doctor will tend to choose a younger..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @davi0937, If available, from my understanding, a transplant doctor will tend to choose a younger stem cell donor. Older cells may show signs of aging, including DNA damage and telomere shortening, which can impair their function and regenerative capabilities. But that doesn’t mean older cells can’t or shouldn’t be used in an effort to give someone a 2nd chance at life. ☺️

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Yes! The more possible donors we can partner with the better! Thank you @loribmt

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