Struggling with decision to move forward with Allogeneic Transplant

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.

Hi aml2018,
That is very helpful advice thank you. My tentative admission date is October 30th. My doctor had advised only having one caregiver for the first 100 days (my husband) so I had less exposure to infection etc. But you have definitely helped me realize we need a firm backup plan in case it is too much for him or if he becomes sick or unable to care for me. Thanks so much. I appreciate the advice.

@aml2018 - Thank you for sharing your experience and the amount of caregiving that was required as well as your day to day life years after transplant. I know the importance of staying positive but feel it must be balanced with knowledge of other possible outcomes - for the patient but also so important for the caregivers. My doctor has just begun the donor search for my BMT required a due to the extensive chemotherapy received for secondary CNS lymphoma that resulted in my bone marrow depletion. Thankfully in remission now and just worrying over the impact of this transplant on my loved ones so very much appreciate your sharing. Take care and best wishes for more good days than bad.

Welcome to Connect @aml2018. And welcome to the growing ‘club’ of BMT members. You’re one year ahead of me with your transplant but same issue…AML with no other option but transplant. It was an arduous journey but I’d do it again in a heartbeat. Thank you for sharing your experience in Connect.
Other conversations you might like to join are:
Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Chronic GVHD ~ Let’s talk about it
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
Were you able to return to work at your new job?

Deb - My apologies. I just read your comment above and see you have already had your transplant!
Hopefully, what I wrote, may help someone at the beginning of their journey!
Wishing you much good health in the days ahead. ❤️

Hi Deb - I was 57 when I was diagnosed with AML. I didn’t really have any time to make a choice - stem cell transplant or die. Chemo started 36 hours after my diagnosis and my transplant was six weeks later. My brother was my donor (10/10).
Almost 6 years later, I am still in remission/cured. It was not easy at all. My life has changed drastically. Some part for the better, some not.
If you are still deciding, it is so important to consider the caregiving support you will have. It is essential. I was divorced and had just moved to a new state to start a new job. I had been there eight months when bloodwork revealed AML. I started treatment in Texas, then made the decision to fly back home to have the transplant. I did this because I was told I would need more than one caregiver. That was an understatement. It is too much for one person. I needed a caregiving team in addition to my medical team. Recovery is a long process and I needed help getting through it all. I was fortunate and am forever thankful to have family and friends there for me.
You need to know and accept that your life will change. Friends will come and go. You may be able to work again - or not. I have good days and bad days, even five years later. But this is MY experience. It is different for everyone.
When making your decision, keep in mind the impact it has on those who love you and depend on you.
If you have loving and committed support, you will get through this. There are so many medical factors to consider, but it was the PERSONAL SUPPORT that helped me get through. I cannot stress how important this support is for recovery. It is a commitment your caregivers must make. They need to be educated. They may need to take time away from their families and jobs. It truly took a village. My daughter had coordinated a care calendar so someone would be with me at all times.
Having support and understanding that your life will change are, in my opinion, two huge factors when considering whether to forge ahead. Most medical teams don’t address this enough.
All that being said, if I could get through this, so can you. You are stronger than you know!