Struggling with decision to move forward with Allogeneic Transplant

I had my BMT on April 9th. Day 164 past transplant. The one side effect i have had in 30 days is dry mouth.
I will say my decision to get the BMT was because i was diagnosed with low to med MDS coupled with a TP53 mutation and a diagnosis of BRCA2 and cancer from that. The Dr. had said i had a couple choices. Watch and wait or look to a BMT.
At that time, most of my care had been in the women's center. Two years. Hematology and my Dr. were new to me. I knew my blood numbers had not recovered from my prior cancer treatment and asked to see a Hematologist. MDS was nothing i expected. OMG.A bone marrow transplant. It was not real till 3 months before when my blood numbers still were going down and a bone marrow perfect match was found on the registry.
I was in a research study at the COH that was to prevent GVHD symptoms. A bit of me thought, what happens when day 100 hits and i finish that pill sequence. What then? Walking every day to what is now 10, 000 plus steps, good eating and good sleep, I am doing well. The one thing I will say is that my hair is just growing. Just starting to cover my head. That is what reminds me that I just had a transplant over 5 1/2 months ago. My 6- month BMB is October 3rd. My hair had just got to my shoulders from my last cancer, and for a2nd before i told the Dr to put my name in the "Be a Match" site, I thought crap i am going to lose all my hair, again. Next thought was i was glad it was not longer. I was reminded it would likely grow back.
I know having Lori and the others on this site talking about the procedures helped me know what to expect. The hospital has guides and all sorts of people sharing things with you. Yet nothing was better than the support of those who had already walked the BMT path or were walking with family through it. For me, this was a key to making my transplant experience manageable.

Thank you so much katgob for sharing your story. I can’t imagine going through two cancers like you did - amazing and inspiring. I am going forward with my transplant end of October. I am feeling scared but also so encouraged and uplifted by stories like yours. The GVHD is a big concern of mine and I will mention your treatment to my doctor. My dr had also mentioned a study their institution was doing to possibly lessen GVHD so I’ll have to look into that as well. You and everyone on this site are a godsend. There is nothing like talking to people who have gone through this to help me feel better.

Deb913- I posted the study i was in and i just cannot find it again!!! Itacitinib- It was being posted in 2020 as a drug for GVHD after you got those symptoms. Then trials continued and continued, and it was found to work preventing GVHD in the early days. The study i posted on a transplant page here was the one i was in. Day 5 to Day 100 i took this pill. Along with the Tacro pill that I tapered off and stopped taking at day 80.
So far, as i said dry mouth but not awful. Allowing yourself the grace to not fill your head with worry. I had few side effects with my 1st cancer and chemo. Constipation and those effects and fatigue. Some neuropathy and funky frozen shoulder came to pass. All was manageable and I told the medical team and got help for all. As a BMT patient, Lori told me on this site we are patients for life. That is good. Living the best lives we can.

It’s a good idea to find medication/clinical trial that may prevent GVHD. I had my SCT in 2016 and had acute GVHD and now have chronic GVHD. What I have now is mild and under control. I don’t regret getting my transplant. I wouldn’t be here if I didn’t.

alive
I hope there is another drug besides the one i was on. I am glad yours in under control. Thank God we have the transplant teams that are here to help with any and all symptoms that come to pass. So much has changed since 2016. I am hoping treatment for chronic GVHD has too. Prayers for all to have a good, good day.