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.

Hi Deb,

And hello to everyone else on the board.

I'm recently diagnosed with MDS (with DDX41 mutation) and being advised that allogenic BMT sooner rather than later is the best course forward.

I'm scared. GvHD looms large in my thoughts and I'm conflicted about going through with the procedure.

I'm wondering where you are in your decision making process and whether or not you've gone through with BMT.

In general, I really appreciate all that have posted on this forum - your success stories give hope!

Thank you!
-G

Thank you for posting this story.

I'm recently diagnosed with MDS and am told that transplant is in my future. I'm scared of course but your story gives some hope. I'm 54 and pretty healthy - no other complicating factors other than MDS. I work out, play sports, and try to eat reasonably well.

I haven't 100% committed yet to going through with the transplant but it seems my choices are limited.

To hear that your husband did well given his fitness level is encouraging. I hope he is doing well today and I hope my journey mirrors his!

Thank you again!

11/19/24
Mayo response:
Hi @sherbs
It is so tough to decide to move forward when you feel well. You might consider a second opinion. For me It helped to have second opinion because that made It feel more secure moving forward to BMT.

I decided to move forward with transplant, and am at Day +14 . And they are talking about discharging me soon, which is about 5-6 days earlier that we expected; so all went well with my Transplant. For me, the worst part was a lingering nausea but it is getting better and they do have a lot medicines to try. Everyone is different in this side effects they may get. Try not to spend too much time reading about all the potential side effects- I put all my GVHD info in one spot and planned to get it if I had GVHD symptoms.

Even after I made the decision to move forward, I was still anxious and feeling like this couldn't be happening to me. But once I was admitted I felt much less scared and anxious. My point being that it's ok to move forward when you feel anxious about moving forward. It's a very difficult decision to make.

Good luck with your decision.
Deb

Thank you so much for your update! Day 14 (15 as I write this)! That's fantastic and just the fact that you are on the forum and communicating so soon after such an event alone is super encouraging!

In my case they are telling me a 4 to 6 week stay at the hospital so I'm surprised they are looking to discharge you so soon? I know different institutions do things differently but that must be a good sign. Super happy for you and sending positive thoughts!

I wake up every morning with that feeling - 'how could this be happening to me?'. I know it well!

I'm going to seek as many opinions as I can but it does seem inevitable that this is my path. And, if that's the case, better traveled sooner than later and having it always looming out there - at least that's my typical attitude.

-G

csherbs. Check out the Bone marrow transplant threads. I was happy to see deb13 with a great update. Melphalan was the chemo used to clear out my bone marrow. Nausea was some trouble, but they will give you meds through the IV. You keep them posted on how you feel. The transplant team wants your best recovery.
I was diagnosed with MDS in October of 2023. After the Bone marrow biopsy, I went into the Be A Match site and a donor was found in a few months. My transplant was April 9th, 2024. I am 228 days past transplant.
Let me talk a moment about GVHD. I was treated at City of Hope in Duarte, CA. Before my transplant i was offered to be in a research study. A drug that was used once people had GVHD symptoms had been tested as a daily drug which for me was from Day 5 to Day 100. I have not had any GVHD. I had a nearly perfect match, a 26-year-old fellow. I hadaaTP53 mutation and although i was low to medium with my MDS, having walked through breast cancer in late 2021 with a BRCA2 mutation, I knew a watch and wait was not for me.

They plan for 30 days in the hospital, but if your numbers are rising and you are eating and improving day by day they may send you home. Lori in the BMT threads will say what i am learning. Losing my hair for a 2nd time, and this time it is not coming back my normal red is funky thing. All my life i was the redhaired girl.
Read through the threads here and speak with your medical team. Your answer will come.