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Anyone experienced Bone Marrow Transplant with TP53 mutation with CK?

Posted by rosegarden000 @rosegarden000, Jun 23 7:01pm

Hello,

I know Steve asked the same question I am here asking for the same thing and also if you did a BMT with Multi-hit TP53

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

katgob | @katgob | Jun 23 9:02pm

rosegarden000
I did have the TP53 mutation. It was found when I had my dbl mastectomy in early 2022. It was noted in my chart, but no action was taken. My genetics profile had already given me Brca2. I had chemo back then, and a drug called Lynparza. My blood numbers were not getting better in August of 2023 after all my treatments ended. I asked my oncologist office to let me see a Hematologist. He looked at my reports, met with me and had me complete a bone marrow biopsy a few weeks later. Ultimately that showed the TP53 and the makings of MDS. Wow! Not yet AML, so I could watch and wait or have a BMT.
I took a couple minutes to think about it. No way was i going to watch and wait. Not everyone will get leukemia, but i did not want to take the chance. There are statistics on MDS and not all is good. What i also know is side effects and statistics are different for every single one of us. My tumor grew fast in my breast and only shrunk half with 13 rounds of chemo.
I got put in the Be a Match system and a 10 out of 10 match was found. My BMT was April 9th of this year. Day 75 from transplant. I had it done at the City of Hope in Duarte California. It was a procedure pretty close to what Mayo does. You will hear about that from someone else I bet. I am sure way more of the research cancer hospitals have transplants with mostly the same procedures. Statistics to say it works.
At 30 days we have a BMB, my donor was nearly 100% of my blood in my marrow. At 100 days I have another to BMB to see how things are looking. So far, the meds i have taken to stop rejection have worked. I have little to no side effects since I left the hospital on April 29th. And, because I had MDS, I did not have leukemia to fight.
More will be revealed.

REPLY
1 reply
rosegarden000 | @rosegarden000 | Jun 23 9:34pm

I forgot to add Multi-hit TP53 with CK*

REPLY
1 reply
rosegarden000 | @rosegarden000 | Jun 23 9:34pm
In reply to @katgob "rosegarden000 I did have the TP53 mutation. It was found when I had my dbl mastectomy..." + (show)
@katgob

rosegarden000
I did have the TP53 mutation. It was found when I had my dbl mastectomy in early 2022. It was noted in my chart, but no action was taken. My genetics profile had already given me Brca2. I had chemo back then, and a drug called Lynparza. My blood numbers were not getting better in August of 2023 after all my treatments ended. I asked my oncologist office to let me see a Hematologist. He looked at my reports, met with me and had me complete a bone marrow biopsy a few weeks later. Ultimately that showed the TP53 and the makings of MDS. Wow! Not yet AML, so I could watch and wait or have a BMT.
I took a couple minutes to think about it. No way was i going to watch and wait. Not everyone will get leukemia, but i did not want to take the chance. There are statistics on MDS and not all is good. What i also know is side effects and statistics are different for every single one of us. My tumor grew fast in my breast and only shrunk half with 13 rounds of chemo.
I got put in the Be a Match system and a 10 out of 10 match was found. My BMT was April 9th of this year. Day 75 from transplant. I had it done at the City of Hope in Duarte California. It was a procedure pretty close to what Mayo does. You will hear about that from someone else I bet. I am sure way more of the research cancer hospitals have transplants with mostly the same procedures. Statistics to say it works.
At 30 days we have a BMB, my donor was nearly 100% of my blood in my marrow. At 100 days I have another to BMB to see how things are looking. So far, the meds i have taken to stop rejection have worked. I have little to no side effects since I left the hospital on April 29th. And, because I had MDS, I did not have leukemia to fight.
More will be revealed.

Jump to this post

Thank you for sharing. do you have Multi-hit TP53 with CK?

REPLY
katgob | @katgob | Jun 24 12:35am

I had a second mutation they found with BRCA2, so that and my TP53. I looked up what you wrote and that says an aggressive disease in patients. This is why many hospitals do chemo to stop the cells, so you are steady before your transplant. CK- homogeneously aggressive disease. BUT!!! the hematology Drs live to kill these cancer cells.
Clear the marrow to remove the mutation and get new cells from a donor with no mutation.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 1 hour ago
In reply to @rosegarden000 "I forgot to add Multi-hit TP53 with CK*" + (show)
@rosegarden000

I forgot to add Multi-hit TP53 with CK*

Jump to this post

@rosegarden000, I added CK to the title of your discussion to differentiate it from the other discussion of the same name here:
- Anyone experienced Bone Marrow Transplant with TP53 mutation? https://connect.mayoclinic.org/discussion/anyone-experienced-bone-marrow-transplant-with-tp53-mutation/

The TP53 mutation is frequently detected in acute myeloid leukemia (AML) patients with complex karyotype (CK). So you have AML? Are you preparing for bone marrow transplant?

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