Anyone experienced Bone Marrow Transplant with TP53 mutation?

Any new news? I have the TP53 at 2%. I am thinking the DR. said they have a couple possible matches. Two months on the transplant list. I will be at City of Hope in Duarte. Today I am in Fredonia NY visiting my sister. If i lived here, I would be at Mayo. He said I will have another blood test in 2 months. See where my numbers are. Platelets at 130.....white cells 2.9 but red are good. I donated platelets till 2021. 25 years. I had high counts. These numbers are why I asked my MO office to refer me to a hematologist.

Hi katgob,
I'm certainly not one to diagnose your situation. But, I will tell you that City of Hope is one of the finest institutions for Bone Marrow Transplants. I probably would have gone there, but Cedars Sinai, another fine institute, is closer to my home. My disease was Myelofibrosis, one of the many blood cancers. I had my BMT on October 13. Unfortunately, I had a few unexpected complications and was in the hospital 38 days. I've now been home 5 or so weeks. My blood counts are slowly moving in the right direction, but the scaring from Myelofibrosis makes the stem cell engraftment a slower process. I am fortunate to have a good support group around me that continue to offer prayers and words of encouragement. As for TP53, doctors at both Cedars Sinai and City of Hope told me months ago that there is no current treatment for TP53. I haven't asked my doctor about TP53, since I had my transplant. I'm focusing on my recovery. My next bone marrow biopsy will be in about 30 days. At that time I'm sure I'll find out if TP53 is a factor. BTW...things are advancing rapidly in cancer research and City of Hope is the right place for new advancements.
A great resource on the internet is Be The Match. They provide all sorts of support for Bone Marrow/Stem Cell transplants. They are also the national registry for stem cell donors. You will most likely get your donor from there.
Best of luck as you move forward!

Hi katgob,
I'm certainly not one to diagnose your situation. But, I will tell you that City of Hope is one of the finest institutions for Bone Marrow Transplants. I probably would have gone there, but Cedars Sinai, another fine institute, is closer to my home. My disease was Myelofibrosis, one of the many blood cancers. I had my BMT on October 13. Unfortunately, I had a few unexpected complications and was in the hospital 38 days. I've now been home 5 or so weeks. My blood counts are slowly moving in the right direction, but the scaring from Myelofibrosis makes the stem cell engraftment a slower process. I am fortunate to have a good support group around me that continue to offer prayers and words of encouragement. As for TP53, doctors at both Cedars Sinai and City of Hope told me months ago that there is no current treatment for TP53. I haven't asked my doctor about TP53, since I had my transplant. I'm focusing on my recovery. My next bone marrow biopsy will be in about 30 days. At that time I'm sure I'll find out if TP53 is a factor. BTW...things are advancing rapidly in cancer research and City of Hope is the right place for new advancements.
A great resource on the internet is Be The Match. They provide all sorts of support for Bone Marrow/Stem Cell transplants. They are also the national registry for stem cell donors. You will most likely get your donor from there.
Best of luck as you move forward!

Hi all,
I do hope Steve replies.
My TP53 mutation looks to have me getting ready for a transplant. In January my insurance company was billed for HLA work. $6,000 plus. I had a blood test the 5th and my platelets are 98. White steady at 289 or so. Red high.
I have a tele- visit the 12th with the Dr. I read his December notes and they had 6 potential matches and one they were working on.
The Dr. Told me to just live life, but stay healthy. I did get a cold a month ago but I am good.
My older sister final understands the TP53. Sort of. She told our other sister she would do nothing if she has a blood cancer.
I want to hear what the Dr. Has to say on the 12th.

Hi @alohasteve. Sorry to hear about your newest adventure in the world of blood cancers. I didn’t have your TP53 mutation but 3 others which made treating my AML difficult. I underwent an allogenic (donor cells) bone marrow transplant 4 years ago, also at the age of 65 and happy to report I’m in a durable remission and feeling as though nothing ever happened. So this is all doable…not a day at the beach but definitely worth the effort.

I’m happy to talk transplant with you. You’re wondering about the preconditioning. For my pre-conditioning I had 5 days of Fludarabine, concurrent with Melphalan the last 2 days. Because I went into the transplant ‘clean’ with a chemo induced remission my doctor opted for no radiation. I had a lumbar puncture to make sure my spinal fluid was free from cancer cells and bone marrow biopsies came back clean 2 months in a row. So he felt comfortable forgoing the radiation.

We all have cancerous cells in our body. Every day our immune system nabs them before anything happens. When we have a mutation, it can trick the immune system into no longer recognizing the cancerous cells so they’re allowed to proliferate. There are some mutated cells which can morph, elude chemo and lie dormant, hiding out for a while. Months after chemo or BMT, they can resurface. The goal of our newly implanted immune system is to recognize these invaders as diseased and do what our old systems could no longer do…exterminate them!
So that last push with Malphalan and/or radiation helps to eliminate any potential interlopers to reduce a comeback. It’s no guarantee but it’s a little more of belts and suspenders.
Side effects whether you have just the fludarabine or combination of both will be similar. Extreme fatigue, nausea, hair loss, gut/intestinal issues, mouth sores. But these pass. The first 2-3 weeks are generally the worst when blood numbers drop to record lows during the nadir period or neutropenic state. Most patients feel physically and mentally exhausted until engraftment of the new cells. Then, as the WBC starts increasing you’ll being to feel much better with daily progression of strength and stamina.

Honestly, any of our chemo meds or radiation can possibly cause secondary issues years down the road. But the gift is they buy us precious time and an opportunity for a second chance at life. If I hadn’t had my transplant it is a certainty that I would no longer be here.

So as long as you’re comfortable with your transplant team, you’ll learn to trust them and your doctor to help guide you through this process. Having a larger top hospital behind you will help insure that you’ll be in the best experienced hands. There are a number of us in the forum who have undergone the process of a Allogenic transplant and are happy to use our experiences to help you through yours.
Do you have any specific questions? Has a donor been found for you yet?

Hello Lori,
You once commented on a response I made about finding a specialist for MPNs. I am now post Polycythemia Vera Myelofibrosis and will be getting a Bone Marrow Transplant. I have my first meeting with the transplant team at the University of Michigan Cancer Center May 13th. My transition to requiring a BMT happened quickly so my head is spinning a bit. I understand you had AML so the conditioning may be a bit different. As I’m sure many of my questions will be answered during this meeting, do you have any suggestions?