That is a tough question that seems to be asked a lot in the Facebook group I belong to. Which isn’t always an easy answer or the right one for everyone. It’s complicated by the unknown results. Everyone has different results and side effects ranging from mild to severe.
I was diagnosed with AML on March 25, 2021. At that time the doctors dumped a lot of information that also included my chance of survival which was hard to hear and understand what was going on not only because it wasn’t good news but also the condition I was in.
The doctor informed me the only chance for a cure was a stem cell transplant and I was a good candidate because I’m a 48-year-old white female. A lot of people over the age of 60ish get this type of leukemia so a person just about 50 is helpful. Plus they said I would have lots of options for donors because of my race. But like everyone else, they looked at family first. My sister was only a half match so they turned to the donor list for a better match. They found a man in Germany that was 12 out of 12 matches. They said he was the next best thing to a twin. I found this very interesting because my own sister was only half.
My diagnosis of AML with the FLT3-ITD gene mutation was the reason they felt I needed to go for a transplant. The FLt3 mutation has a high relapse rate and not only that it can come back at any time untreatable leaving me with days to weeks to live before it takes over. That is a scary thought and something I struggled with. The very thought of high dose chemo to wipe out and kill off my bonemarrow the very thing that produces the cells bad or good to live scared me to death. We’re not just talking about killing cancer which I’ve already gone through at that point but knocking me down to the point of not being able to fight off anything. It was like a nightmare and a hard decision that kept me up at night.
An allo transplant comes with many possible complications. GVHD or Graft Vs Host Disease can be very mild to very severe. It wasn’t long after coming off the anti-rejection drugs that GVHD started to be an issue. I was having issues eating with little to no appetite or sick in my stomach which makes eating very difficult. I dropped a little weight and became malnourished for a little while because of my lack of appetite. Also, I had diarrhea too. It was to the point of going six to eight times a day. I also would have loose to watery stools which threatened my system with dehydration. I even started to notice whole pills in the toilet. One of my meds wasn’t even absorbing. The doctor said things were moving too fast through my system.
Then my face felt like leather and peeled like I had a major sunburn but that wasn’t the case. The weather was still a crisp 40 degrees outside. No outside fun for this girl. Some days my face would be bright red which for that time of year was very strange. My eyelids became very sore and red too. The dermatologist gave me some steroid cream to apply daily to my face to help clear up.
It wasn’t long before I awoke with my eyes matted with yellow gunk making it hard to see and sometimes painful to open my eyes. After trying an antibiotic the doctor said it wasn’t an infection like pink eye it was GVHD. I ended up receiving drops to help with the eyes which at first helped greatly but after a while, things started getting blurry. It was like the world was hazy and very hard to see. That’s what I’m still dealing with today.
After what I know today would I do it again? I guess I would have to say yes because I’m still here. I get to watch my grandchildren grow up for at least now. So it’s worth it to me. There is no guarantee I won’t relapse at this point leading to another transplant but it’s better than being dead. I know that sounds harsh but others with the same diagnosis couldn’t even make it to transplant. So I consider myself blessed by all means.
Everyone’s journey is different. There isn’t a one size fits all treatment for AML. A transplant might be the best option for me but it might not be for you. There are many factors that play into the treatment and that is something to be looked at by the doctors and patient.
If you’re about the start your transplant process or still undecided I wish you the best of luck. Feel free to contact me or just follow along with my journey. XXX to you all