Interesting news!

[Sand-Dancer]

leukaemia.org.au/news/one-w...

[OneSoLucky]

I live in Sydney and have ET JAK 2 Negative but CALR positive I was diagnosed about 14 years ago when I was 33. I am in good health except for fatigue in the early evening. I have tried interferon with horrible side effects have since been on Hydroxy which I tolerate but believe it has thinned my hair and dried out my skin it would be great to have an alternative. I am due to see my Hemotologist next Thursday so it will be interesting to see how quickly thing progress with PBS. Anyway thanks for posting the article and a huge thank you to Natalie for pushing this with the medical beaurocrates here in oz. best in health Kirsty x

[socrates_8 in reply to OneSoLucky]

Firstly, very well done Nathalie...

I also live in Sydney, and was originally diagnosed in May 2016, with ET JAK 2 Negative – CALR + (type2).

Since that time, it was decided due to the results of my BMB (Grade2) that I am now classified as Myelofibrosis.

Fortunately, I was able to start on Ruxolitinib in December, and overall, my quality of life has improved quite markedly...

Personally, I could not tolerate either the side-effects of Hydroxy or (the depression generated) by Interferon...

Apparently, there are some claims that the Pegasys is far superior to standard Interferon. Hopefully, it will prove to be correct, and will eventually be picked up by Roche allowing the 'quality of life' to be enhanced for many more MPN sufferers...

Steve

(Sydney)