[Greg H]

Hi all!

It's been a while since I filed a Danazol progress report. Before starting on Danazol, I had a two-week transfusion interval. After about three months on the drug, that began to lengthen a bit. By April, I had a four week interval. That held in May, and I pushed it to five weeks in June. But I may have pushed it a little too far, because I'm having a transfusion on Friday after only three weeks. However, given that I'm being transfused at a solid 8.0 Hgb level, I expect to be back up to four weeks next month.

I must say, it is much nicer having transfusions only every four weeks instead of every two.

I had my sixth-month follow-up at NIH at the end of May, and really have very little to report, other than that I gathered from Dr. Dumitriu that he feels the Danazol trial is, on the whole, showing very good results. But nothing will be published for another 18 months or so, so he wasn't too forthcoming.

The follow-up testing is mostly lung-oriented, since some of the folks on the trial have pulmonary fibrosis, and that disease is one of the consequences of the TERT mutation that I have. Fotunately, I don't, so there's nothing of interest to report on that score.

I'll have a BMB at the one-year follow-up in November.

I'm still taking 1500 mg of Exjade every morning, and that appears to be having a positive effect. My ferritin topped out at 5178 before I started on Exjade in early March. This week it stood at 3408. So the Exjade appears to be working.

Happy Independence Day!

Greg