as anyone got et with fibrosis

[tommy123]

as anypne got et with fibrosis and on majic study

[beetle]

Not on majic trial but I am using ruxolitinib at the moment and my platelets have been in normal range for six months now since I started using it. Not had another BMB to see if any effect on fibrosis. Never had platelets stay in normal range for this long since diagnosis nearly 20 years ago while using HU. Good luck if you are considering the trial or are already participating. I hope my results will be commonplace on this trial

[Twinkly in reply to beetle]

Hi beetle.i too am having very good results 5 months since I started the Majic trial ,the difference in my energy levels is quite amazing.i can walk quite a distance,every day ,I saw the prof at the clinic this month ,he was very impressed ,he actually remarked on the healthy diet I now follow after reading the PH Diet .book..broccoli every day,all greens,and fruit,lots of water and juice,home made soup.its so easy ,and the results are very quickly seen.

[tommy123 in reply to Twinkly]

i got phone call today i am geting abuddy

[Twinkly in reply to tommy123]

Well done tommy ,good luck with your new buddy,I am sure it will help you to talk to a friend..

[bernie62 in reply to beetle]

hi beetle. have you had myelofibrosis for nearly 20 years. if so thats good news for all of us.

[beetle in reply to bernie62]

Sorry, bernie62. I wish I could give you that good news. No, I was diagnosed with ET nearly 20 years ago and then with MF just over 2 years ago. I'd dearly love to live another 20 years - with MF if I had to!

[Klys in reply to beetle]

Beetle, if you were diagnosed with et 20 years ago does this mean we can live quite long. I suppose it depends when you are diagnosed. I am newly diagnosed aged 64 and feeling scared and thinking I don't have long to live. Havnt even started medication yet the HU terrifies me so just taking asprin although I am high risk. My platelets now at a high 700.

[beetle in reply to Klys]

yes is the answer to that! I have heard it said more than once that most people die with ET rather than from it! There are people on this and other forums that have lived with ET for 25+ years with no real problems. I happen to be one of the estimated 5% who progress to Post ET MF but even now with careful treatment I am plodding on. FEAR is False Expectation Appearing Real and I try to sit on it when it rears it's ugly head! (sometimes more successfully than others!) Take care and try not to be scared. ET really is one of the more benign diseases out there!