September 29, 2026
I had another treatment and follow-up visit on September 29, and for the first time in a while, I came away feeling like the picture is becoming a little clearer.
The best news is that the treatment appears to be working.
My oncologist examined my skin and was very encouraged by what she saw, especially compared with where I started. At one point she looked at my back and said the improvement was “night and day.” She also told me that I looked fantastic, which is always nice to hear from your oncologist.
She was careful not to get ahead of things. My skin is not completely clear yet, and she said that I am not in remission at the moment, but I am “marching firmly in that direction.”
I think that is probably the best description of where things stand right now.
One interesting thing they have noticed is that the areas of my body that are normally uncovered seem to be improving more than the areas that stay covered. Because of that, they want me to get about 15 to 20 minutes of sun on my chest, back and legs twice a week. Apparently, a little controlled exposure may help the skin response, so I now have what may be the easiest assignment I have received from my medical team so far.
I have now completed six infusions of mogamulizumab and am about seven weeks into treatment. My blood work continues to look reasonably good. My white blood cell count has improved somewhat, my hemoglobin is holding fairly steady, my platelets are acceptable, and my liver and kidney function look good.
More importantly, I feel pretty good.
My energy has improved. I have been getting up earlier in the mornings, eating well — perhaps a little too well — and generally feeling more like myself. I recently spent a weekend with some longtime friends and am getting ready to spend a week in Colorado. A few months ago, I was not sure how much of that I would feel like doing.
There are still some skin issues that are not completely resolved. I have a stubborn area on my abdomen that I have thought might be fungal. My doctors are not convinced, and it may simply be another part of the underlying skin disease or the way my skin is changing as treatment works. For now, it is not particularly uncomfortable, and nobody seems especially concerned about it.
The bigger development is that the stem cell transplant process is starting to become much more real.
The transplant team called and told me they have identified a potential 9-out-of-10 donor match. They had previously identified a 10-out-of-10 match, but that donor was no longer available after being contacted. They are continuing to look for backup possibilities, but having a potentially usable donor is an important step.
I have a meeting scheduled with the transplant physician on October 14. I expect that conversation to answer many of the questions I still have about timing, donor selection, risks, radiation treatment beforehand, and what needs to happen before we would actually proceed with a transplant.
I have certainly not lost my concerns about a stem cell transplant. It remains a very serious treatment with very serious risks. But as I told my doctors, I am beginning to accept that it may be the path I ultimately need to take unless there is a better alternative.
For now, though, there is no reason to get too far ahead of myself.
The immediate goal is to keep responding to the treatment I am receiving now. We should repeat imaging in roughly another month, and that will tell us much more about what is happening beneath the skin — in the lymph nodes and the other areas that showed disease before treatment began.
So I am trying to take this one step at a time.
I am not in remission yet.
I am not finished with treatment.
There is still more progress to be made, and there are still some very big decisions ahead.
But after several months of uncertainty, it feels good to be able to say that things are moving in the right direction.
As my oncologist put it, I am “marching firmly in that direction.”
For now, I will take that.
