Hi Diane -
I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic leukemia. I am also a nurse so I know how we can overanalyze all options and it can feel overwhelming. Making the decision to move forward with the sct was very difficult for me because I felt really good and my cancer was staying under control with a chemo pill called Jakifi.

The reasons why I decided to go through with it instead of watching and waiting:
1. You actually get the best possible outcome when you have the lowest disease burden and are in otherwise good health. For myself I have also had Lupus (SLE) and HLH (rare and serious immune condition that acts up with no warning).
2. I considered that if I had a serious Lupus flare or HLH flare then I would be really sick and in recovery for months and if my cancer also decided to act up and I then "needed" the sct, I might not be able to do it or certainly it would be riskier.
3. It was a matter of when not if I needed to have a transplant - so like you it is just a timing question - from what you said, it sounds like you will need it as some point. So the question we asked ourselves was what do we gain if we wait - the answer for us was months or maybe a year of feeling pretty good and living our life versus doing the transplant soon when I had a very low disease burden (only 1% cancer cells vs 37% when I started jakifi) and my lupus and HLH were quiet.

Before my transplant I also wrote into this group because I was so scared to move forward, so I absolutely know the feeling of being so scared to move forward. It's a risky procedure and it's scary the more you research it (so stop researching it lol). But for me at the time, I decided to move forward because I had to hope that I would do best with my low disease burden and was relatively healthy otherwise.

My recovery (except for persistent fatigue) has been better than average and I'm very glad I did not wait. In hospital I only had nausea and fatigue not all the other things you hear about, and I have had no GVHD. I mention all this because I am usually the one who gets the rare and bad outcomes, so if I can have a good outcome I feel like it's possible for anyone.

Also want to add, here are some things I did in the days and months before transplant that helped with anxiety and made me feel better about proceeding:
1. Get a good online therapist. Also consider natural supplements, teas or prescription stress relievers.
2. Baths and walks were a great stress relievers. Also for immediate stress relief - a)name 4 things. you see - like red sign, green grass, black car, whatever b)3 things you hear c) 2 things you smell. This short circuits the stress response and helped me to not burst into tears - lol usually I only had to do the "things I see" part and I felt better.
3. Have a couple of friends you can call to vent about your fears.
4. Have a get together with friends and family so you get to see all the people who are important to you.
5. Take a wonderful trip if you have time.
6. I also found a book called Radical Hope very uplifting because it emphasizes that people with tough cancer diagnoses are recovering all the time and gives tips to try, without being overwhelming.
7. I will also tell you that on the day I was admitted when the central line was put in a calm feeling came over me and my anxiety (which was very high) vanished upon admission. I wish this for you and there is a good chance you will feel this way because the sct staff are so knowledgeable and watch you so closely that you will feel very well taken care of.

I hope this helps. You've got this Diane!

My very best to you,
Deb