When I was asked to join the Majic trial ,I was given a diary sheet ,every day I fill in ,when I take my drugs ,and how I feel .its useful .

[Twinkly]

It's a full scap sheet ,put 4 lines down .put date on left column ,time in middle ,on right how I feel today ..I write in when I don't sleep .if I can't eat ,how my digestion is that day ,if I'm exhausted , since I started these diary sheets which I take with me to my clinic appointment ,,I have a better understanding with my team and with my specialist doctor too. If you change the time you take your medication .( say from morning to evening ,,then you can look back on the sheet to see the good or bad effect ,this change made, I keep my diary sheets with my drug in a 7 day dispenser ,so I know if and when I took them. Because I lead a busy life ,it only takes a minute but it helps you keep track of your ups and downs, like me !! Lets help each other with ideas to make life better .

Keep in touch. Twinkly. Xxxxx

[TrickyDicky]

Thanks Twinkly. That does seem helpful.

[Twinkly in reply to TrickyDicky]

You are welcome ,it only takes a minute ,but it's a great help on yout clinic visits .

[StuEP]

Hi Twinkly

Could you tell me how long it was between being asked to join the Majic trial and actually starting it? I was asked to join a month ago but haven't heard anything since.

[Twinkly]

I had testing done first ,,extra bloods . Ultra sound scan on my spleen and liver ..then gave bone marrow ..filled in questinair .it was all sent to London .for a team to be put in place ,,I now have 5 looking at my case , a special nurse ,comes to all my appointments .she emails or phones me between appointments too. I live on my special diet to make me well..my big problem was sweating ,,flushes ,,venesection often .irratic results ,

At first you have to visit clinic very often 2 weeks ,,,if all goes well you go on to 4 weeks ,you sign up to give extra testing ,and bone marrow for them to check to see if your ruxolitinib is working correctly ...you are asked all questions every visit and spleen measured and all is noted ,,all your pills are noted and not given in chemist shops ..

Hope this helps you to understand ,,I know why it costs so much to monitor us ,,but I feel privalidged to have such care , twinkly. Xxx

[StuEP in reply to Twinkly]

Hi Twinkly, thanks for the info and sorry for the delay in reply...been poorly.