Struggling with decision to move forward with Allogeneic Transplant

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 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! 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?