Connect
Struggling with decision to move forward with Allogeneic Transplant
Hi,
I've been reading so many stories and feel humbled and encouraged by everyone. Right now I'm really struggling with committing to moving forward with my allo stem cell transplant. I am 60 and was diagnosed (Dec 2023) with a very rare leukemia (chronic eosinophilic leukemia), so there are no good statistics about outcomes. I am told there is no long term treatment and the only possible cure is an allo stem cell transplant. I have already gotten opinions from heme/onc and stem cell teams at two very good hospitals who recommended moving forward sooner than later due to possible complications of waiting. We were thinking of moving forward with it this Fall, but then the 3rd opinion doctor who is a world expert recommended delaying and monitoring monthly until something changes. After much thought, we still felt it was best to proceed this Fall while I am “healthy” rather than wait and possibly have additional problems (I also have lupus and had HLH), plus concern for it turning into AML. But I find my previous positive attitude is gone and I am now feeling very scared and unable to commit to proceeding, even though I logically know it’s the correct thing to do. I feel blessed to even be given the opportunity to even have the transplant since many CEL patients don’t find it early enough to have the chance, but at the same time I suddenly feel terrified of moving forward. Has anyone else struggled with losing your positive attitude about transplant or struggled with making the decision to move forward with transplant. Thanks for any thoughts you have.
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
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.
-
Like -
Helpful -
Hug
2 ReactionsHi 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!
-
Like -
Helpful -
Hug
5 ReactionsThank you so much. I will definitely mention this to my doctor.
-
Like -
Helpful -
Hug
1 ReactionI forgot to say if nothing else, your doctor could email the doctor listed as the lead for my trial at the COH.
-
Like -
Helpful -
Hug
1 Reactiondeb913
I have been going to other pages and i missed this post. The pill was itacitnib. I found a study in google that talks about this being used for GVHD symptoms. The study I was in was to see how this works to stop gvhd from happening. You could look up the City of Hope study with this drug. It has been tested in other research hospitals around the country. I was the not the 1st trial. Maybe the 3rd after others had proved it works. They had 2 study times and i was in the 2nd. I am 157 days past transplant today. My 6 months is Oct 6th. NO GVHD. Why? Was it the combination of the Tacro and the itacitnib? I hope to be a person who shows that this pill combination works. My blood numbers and neutrophil counts have been good. The key is 6 months. Will i continue getting stronger?
Adding Itacitinib to Cyclophosphamide and Tacrolimus for the Prevention of Graft Versus Host Disease in Patients Undergoing Hematopoietic Stem Cell Transplants
https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2022-03765&r=1
-
Like -
Helpful -
Hug
2 ReactionsHi Katgob, Thank you for the inspiring story. It’s so helpful to hear from people who have done well. Can you share the name of the pill you were on that helped with preventing GVHD? I’d like to ask my doctors if they use that or something similar. Thank you.