Struggling with decision to move forward with Allogeneic Transplant

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 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!

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

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.

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.

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.

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.

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.

Hi - thank you so much for sharing your story. I have made the decision to go forward with the transplant end of October. I feel very nervous and full of questions, so hearing your encouraging words helps so much.

My husband was diagnosed with MDS subsequent to treatment (he had six months of chemotherapy to treat chronic lymphocytic leukemia ten years ago) last November. His oncologist told us it was a very high risk disease that would likely take his life within about 18 months. He referred us to the Mayo Clinic in Rochester for consultation about an allogenic stem cell transplant as the only option for a cure. I was devastated. When my husband was diagnosed with CLL, allo transplants were extremely risky and had less than 30% success rate. I did not know about the tremendous progress that has been made since then.
My husband was determined to move forward and I climbed a steep learning curve fast.
His transplant specialist recommended several months of chemo therapy to improve his chances for a successful transplant. During that time I became convinced the allo transplant needed to happen and that it was the best option for us to have more time together and a better quality of life (he became transfusion dependent for weeks during the wait). Indeed, I advocated for him when things were at a standstill and while still frightened, I was glad when we got the dates to move forward.
Today is Day 29 post transplant and he is doing great. We’ve had a rough ride sometimes but are more convinced than ever that this was what needed to happen. The team and the facility here are incredible and they’ve had us every step of the way. We have a long way to go but we both know that we are doing every single thing we can to get to spend more time together.
That’s our story. It was not an easy decision and I had many doubts at first. With support here and from the Leukemia and Lymphoma Society and the National Marrow Donor Program and our dear family and friends, we have made it this far and hope for a wonderful future. I hope the same for you, all the best.