Transfusions, Desferal, and Ferriprox. After 40 units of blood, I developed iron overload and was treated with Desferal intravenously 4 days per week with infusions from a small home pump (looks like a lemon) into my port-a-cath. Desferal had a good effect until December 2008 when we had to increase the dose. In March 2009 I had to start treatment with the oral drug Ferriprox (not approved in the U.S.). Ferriprox works synergistically with Desferal and it has had a good effect on my ferritin value. Ferriprox can cause agranulocytosis (no WBCs) or neutropenia (low neutrophils) so I have to have blood tests once a week.

Vidaza? My doctor is a specialist in MDS and Vidaza so I expected that when my bone marrow function decreases I would try treatment with Vidaza. I hoped I would belong to the about 50% that have a haematological response.

I was very afraid of adverse reactions and told my doctor initially that I wouldn't accept any treatment that made me feel ill — I prefer to live a shorter life with good quality. Neupogen, Desferal and Ferriprox have not caused any adverse reactions. Ultimately, I decided that I preferred supportive treatment to the chance of adverse reactions from Vidaza.

From Ferriprox to Exjade. The iron chelator Ferriprox decreased my WBCs so I had to stop taking that drug. Instead I tried Exjade, but that decreased my WBCs too, so I can only take 500 mg/day instead of 1250 mg that I should take according to my weight.

By October 2009 I had received 100 units of packed red blood cells.