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Old Mon Feb 27, 2017, 11:10 AM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Dane, I enjoyed reading your blog. It brought back vivid memories of expectations when I was at your stage. As we all know, it seems every person's journey is different.

I experienced no pain through the entire process. It was mostly fatigue and being uncomfortable with doing basic life functions. To my surprise I was not interested in reading, watching TV, working on the computer or entertainment in general. The transition for me was interesting because I felt great going into the SCT. I was golfing and walking the 6 mile hilly course all summer right up until a week before the SCT.

I only had four days of chemo prior to the SCT ("mini-transplant") because of my age. The first two days I thought this was going to be a breeze. I walked at a brisk pace over five miles each of those first days and enjoyed everything I wanted on the food menu. About halfway through the third day the fatigue set in and I struggled to walk a half mile. The fourth day I was slowed more. Soon I experienced a great sense of smell which was problematic. The rubbing alcohol was especially difficult and I had to cover my face every time. Additionally, the taste of food and water (almost all food) changed completely. For me the food tasted like dirt clods. This is when you need to use your imagination to find something that works for you. For me it was tomato soup.

Then came the SCT. My donor was a 20-year old male in Germany. He was the only good match that was found. The SCT itself was uneventful and I slept through much of it. As expected I continued to be very tired. My blood counts came in about Day 11. I had a BMB at Day 30 and my chimerism was 100 percent. I left the hospital on Day 14 still feeling very fatigued but glad to head for a close by apartment. We had to be within 20 minutes of the hospital. Each week I was walking farther and went home from the apartment at Day 80.

I had very few side effects. No mouth sores, very little skin GVHD, some itching of face and scalp but relatively manageable.

As previously noted, every experience has its own personality. We wish you the best and I will look forward to continue reading your blog.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Mon Feb 27, 2017 at 06:53 PM.
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