Struggling with decision to move forward with Allogeneic Transplant

Hi Deb! It’s a big decision moving forward with a bone marrow transplant. However, from my personal perspective of having a transplant 5 years ago at the age of 65, I’d march right into it again in a heart beat. I’m super healthy and feel as though nothing ever happened.

I had AML and you don’t want to wait until that develops if you can help it. Right up front you’d potentially be avoiding months of chemo to treat the AML before moving onto transplantation. The healthier you are going into transplant, generally the more positive the outcome longterm.
Since having a bone marrow transplant gives you an entirely new immune system it may also take care of your lupus.

SCT/BMT not an easy process and there is a lengthy recovery period. However, it has the potential for giving you a normal, healthy life span and curing you of your CEL. It is a second chance at life.

There are several members in the forum who have had SCTs. My ‘Tag-team’ of members whom I rely on in discussions like this where you need some moral support are @alive @edb1123 @kt2013 @jrwilli1 @tkidd51 @mary612 and @katgob. We’ve (or family members) all been through this odyssey, some 10 years post transplant on down to just under 100 days! We’re here to help you by being a sounding board or guide along the way. You’re not alone. We have walked that walk and want to make sure you feel ready to have that 2nd chance.

You will need to be near the facility where you’ll be having the transplant for usually for around 100 days. Some are inpatient procedures where you stay in a clinic for a few weeks. Some clinics, such as Mayo are done as outpatient. I had to relocate to Rochester MN for 4 months. It seems daunting but the time went quickly and it was the best decision I could have made. Where are you considering having this done?

Hi Lori,
Thanks so much for your reply. It helps so much to hear from someone like you who has been through it; and the fact that you are 5 years out and feel good is so wonderful to hear. I’ll likely have the transplant at Emory Winship in atlanta. They admit you for one month, then at least 2 weeks at a nearby hotel and then home which is about 45 minutes from the hospital. It really helps to hear success stories like yours.

Hi, Deb. Thanks for your note. I am an 11 year survivor of an “ugly” leukemia. After considering the odds, I decided to go all in. My sister donated 5+ million healthy cells which replaced my immune system after a month of conditioning and then high dose chemotherapy.
These decisions are never easy. Often our prior experiences inform how we face these challenging decisions. Whatever you decide, trust your judgement and intuition. It will be the right decision for you. I was told transplant was my best chance for a long term remission. Chemotherapy is really hard, but it was the right decision for me.
I am a woman of faith and believe all of my days were decided before I was born. I guess my earthly assignment isn’t completed yet 😊.
You are now a member of the Mayo “family”, so please keep in touch on your journey.
Keeping you in thought and prayer.
Katie

Hi Deb. Each one of us who have gone through the transplant process has entered into it with trepidation. For me it was an easy decision. I had no other options ahead of me. It was transplant or possibly a year or less of rapidly declining health with heavy chemo every 28 days until it no longer worked. I’m not one to be complacent and give up without a fight. I had the opportunity for a second 2nd life!! Of course I’m going to do it!

My transplant doctor was very upfront with potential risks. But the benefits of going through with the transplant way outweighed any downside for me. I trusted my doctor and my team. You will be able to do that too! Transplant teams don’t want failure either and will do whatever it takes to keep you healthy and have a successful transplant.

Right now, I can feel you’re stuck with the flight or fight instinct. I can only speak from my experience. Obviously, there can be some risks with a BMT but the positive outcome may leave you with a new immune system which would replace your defective bone marrow which is currently working against you. It could help you avoid AML and also potentially cure your lupus. It’s a lot to think about and a very personal decision. But if you need a cheer leader or an infusion of optimism, I’m here for you any time! ☺️

Thanks Katie. I appreciate your note.

deb13
I am Kat at 142 days past my bone marrow transplant. I met with the hematologist, who asked me to get a bone marrow biopsy. That gave the results that i had MDS. It was light to the mid-range in development, but i had a TP 53 mutation and a couple other things that had me thinking. If I watch and waited, would I be one who developed AML? 2 years before this I was found to have breast cancer and a genetic test showed i had Brca2.
As the doctor asked me if I needed time to make a decision, I thought for just a few minutes. I said put me in the "Be a Match" system. Even if they found a match, I could ultimately saw no. Finding a caregiver for the 1st 100 days was the hardest. COH in Duarte California has you in the hospital for the 1st 30 days. May has outpatient days. I did not have a caregiver those 30 days. This was perfect for me.
As the days progressed, I know i have had little if any graft vs host disease symptoms. It is crazy. I believe getting this done before my MDS advanced was a right call for me. I was 60 at my BC diagnosis. 63 for my transplant. Blessed my donor was a 26-year-old male 10/10 match. I did not know him. From Europe. I participated in a research study with a 2nd anti-rejection med for 95 days of my 100 1st days. I believe that has helped a bunch my having no GVHD symptoms.
Take the time to ponder life. As Lori said, there are a number of us on this journey. We are here to listen.

@deb913
Hi Deb
We are so glad you found this forum and reached out about the decision you are facing.
My husband, at 64 yo, was diagnosed with high risk AML in January this year. It came out of nowhere and we were told he had a year to live. Shocked and heartbroken, we sought treatment at Northwestern Medicine in Chicago, where they immediately started induction treatment to reach remission and said SCT was his only chance to beat this and be cured. We sought a second opinion at MD Anderson a couple months later regarding the transplant. They reassured us this was the best plan of care.
We were told all the risks in great detail but one of the biggest factors before proceeding with the transplant was his fitness, that is, his overall health and strength. Thankfully, he had no other chronic health issues, and was in great physical condition, waterskiing several times a week just last summer. He reached complete remission after 3 months of induction therapy and had his re-birth day on June 12,2024 with the cells of a 34 yo man (11/11 match) from Germany, to whom we are beyond grateful and hope to meet someday to thank personally. Today he is day 80 post transplant and doing very well, with no evidence of disease present. We have hope for the future, waking up very day grateful for another day, and trusting our medical team to guide him to the day we can consider him fully cured.

If it helps you to know this, the stem cell team has commented to him that his fitness level made a great difference in his recovery from the transplant. Going into this when your health is at its best can be a wise choice, if one has a choice, although I empathize with the difficulty of this decision. I also must say that the transplant process, especially if you have it performed at a health center that does a lot of them annually, can be trusted to carry you through competently because they have the experience and expertise to manage everything, every step of the way.

Please, as you go through your next steps in this process, do not hesitate to ask questions or seek support here. Lori is the lifeline so many of us found and many of us want to give back and help others as well.

Hi Kat, Thank you for your very helpful comments. You have pointed out the benefits of proceeding with transplant when one is feeling well and that is where I am at, so that was helpful to hear. The comments from this group are just the encouragement I needed to feel more comfortable moving forward. It helps to feel like I’m not I this alone, so thank you so much.

Hi Mary, Thank you for reaching out. All the stories and encouragement I’ve heard from you and others on this site have been incredibly helpful. I have felt so alone and scared because the only people I’ve known that had an allo transplant died from an infection and it beyond helpful to hear all your wonderful, positive outcomes. I have to have the transplant, and all your comments are helping me feel more comfortable with that. I can’t thank you and everyone who has responded to me enough. It has meant a lot and helped tremendously.

Hi again Katie, I felt my other short note of thanks did not properly convey how much I appreciate you and others taking the time to reach out and share your experiences. Wow 11 years out from transplant- that is amazing, wonderful and so encouraging. It really helps alot to hear your positive outcomes.