R went in for his monthly infusion of Imetelstat, one of the many drugs that’s being tested on patients with myelofibrosis. Surprisingly, the clinic sent him home without the infusion. This was because his anemia got worse, meaning his hematocrit, hemoglobin and red blood cell levels registered at extremely low levels. When that happens, the drug protocol indicates the patient can’t have the infusion. Why? No one explained it to us. I”ll have to ask them about it the next time he goes in.

The key takeaway is that R’s hematocrit and hemoglobin dropped in the past week to even lower levels than before, and they were already low. His main symptom is fatigue. The doctors are puzzled by the drop in blood levels, but it could be due to immunizations R recently received, although, they’re guessing on that.

He’ll go back to Fred Hutchinson Cancer Center in about three weeks for more blood tests. If the anemia has improved, they’ll move ahead with the infusion.

Up until this week, the drug improved one of his blood counts (LDH) and everything else appeared stable. The docs don’t seem overly worried. It’s probably a blip on the radar of this long haul journey. R’s spirits are excellent, and we have lots of fun stuff planned in the near future. It’s such an honor experiencing life with him-the big things and little, good and bad. I’m proud of how he’s handling this.

I am including a link to a video on myeloproliferative neoplasms and anemia. I found it pretty helpful.