CommunitiesMyelodysplastic SyndromesShould I push for stem cell transplant with TP53 mutation MDS?

Should I push for stem cell transplant with TP53 mutation MDS?

RA

Community Member

6 months ago

I am 71 and diagnosed with MDS inJan of 26. Bone Marrow biopsy positive for TP53; ETV6. Placed on Inwovi which in 2 sessions has my platelets normal and HGB up to over 10. White blood cell down. Doctor is very happy. Does anyone have experience with long term Inqovi. I am thinking with the genetic mutations I should push for stem cell. Any input?

6 comments
Comment
CA

Community Member

6 months ago

Treatment decisions for MDS with genetic mutations can be complex, and it's encouraging to hear that the current treatment is showing positive results. Many community members have found it helpful to discuss all available options thoroughly with their oncologist, including the timing and benefits of different approaches. Others in similar situations may be able to share their experiences with various treatment paths, which could provide valuable perspective as these important decisions are considered.

DH

Community Member

5 months ago

After several trmts none of which worked I tried Imetelstat which didn't work felt rotten with trmts stopped in Dec now having a lot of extreme bone pain why?

KA

Community Member

5 months ago

MDS w/5q deletion......Lenalidomide for 5 years, now chemo with Decitabine.....having transfusions every week.

KT

Community Member

3 months ago

Inqovi put me in Septic Shock and almost killed me.

SR

Community Member

2 months ago

I would not try stem cell transplant. It is very involved and time consuming and not recommended over 70 years old. But if you're in good health otherwise Drs may do it. You go thru a lot if test for months before so you have to live near the hospital. Surgery is rough in both parties. You are in the hospital afterwards for two or more months with recovery a year or longer but if you survive all that you will be cured but i just found out some have more transplants. I have foor bad mutations and only one good one so it's a real battle killing the bad cells and not the good ones. Pray and have good support.❤️🙏

JC

Community Member

23 days ago

Hi Randy. I have MDS with TP53 mutation Recently underwent a bone marrow transplant at Moffitt Cancer Center in Tampa Underwent an experimental drug SX682 to put a bay the mutation which was effective prior to transplant. Going on my 175th day post transplant with getting healthy by the day blood counts are all starting to normalize One day at a time good luck, Jim

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