My specialist says I can lengthen my visits to 12 weeks from now on ..
I may be asked to try a new drug .trial for 2018 .to add to my existing drug ,
My healthy eating and drinking also makes the difference to my lifestyle .
Only fresh food and no processed ,tins or packets ,no ready meals .
Only growing green Vegs ,and fruit ,little dairy .no red meat .
I feel so much healthier since making the changes .
Thats brill Twinkly really pleased good idea for us all to look at diet changes im sure 😄
That’s brilliant Twinkly and 12 weeks is fantastic well done you .
You are an inspiration to us all xx
It's really so easy to eat and drink healthy now ,the supermarkets full of wonderful veg ,some already chopped and peeled ..the slow cooker makes wonderful supper meals ,,with garlic chicken and carrots and onions .all root veg so good for us ,with blood problems ..try to think ahead when shopping .dont leave it till the last minute ,,,then grab a snack ,,,,. If you must ,make a healthy omelette ...with butter and fresh milk ...add a few veg and tomatoes ...it's that simple .... Twinkly ..xxx😘❤️😍
Well done. Happy blood results should be celebrated xx 😁😁😁
Hi, I'm in Rux too, since October, and it's slowly bringing my bloods down but there is a long way to go.. May I ask what the new drug they might add to it is, if you are allowed to say. Best wishes, Frances.
It's so good to hear how well you are doing. I have also revised my diet and although I have the occasional lapse I pretty much follow the same guidelines. I was amused the other day when a young person on the supermarket checkout commented on my healthy shopping!
As Frances also asked, what is the new drug that they might add. I am finding all my counts very low at the moment. I'm on Ruxolitinib and iron chelation. I am blaming the low results on the iron chelation so I don't have to consider the fact that my MF is progressing! 😉 Denial? Me? No!
Best wishes Jan x
The new drug trial is not set up finally as yet it's early stages for us with MPN. It's a well used cancer drug for breast cancer problems ,been used for 10 years ,,more recently success in bowel cancer as well as men's prostrate . .its very early days in our clinic ,it will mean demanding invasive testing again ,often appointments at hospital regularly ,the dreaded bone marrow tests again .its a big decision to take on again .iv been there done that with the majic trial ....that was my personal success story ,but another trial is a big decision for me .....twinkly ..xxxx
Brilliant , , it's good to read a success story and I happen to think that Ruxolitinib is a wonder drug for some it didn't quite do the business for me pre-transplant but I'm sure it's helping me now , certainly my appetite. I'm not as good as you but I have a balanced diet , a large Melton Mowbray pork pie in each hand ! (Other pork pies are available) . My wife mentioned Pat Choi the other day and I thought it was one of her coffee crowd.
Seriously I'm pleased that things are going well and can see why you might be reluctant to start another drug ytial especially if it's unclear as to what additional benefit it brings.
Chris xx
Hello Chris ...I'm so very pleased to hear from you again ...the bone marrow transplant must have been so very traumatic ...I think about you often my lovely boy . I know it was hard for you to give up the good life ...the amber Nector. and the Mac Donald's Big Macs ....but life is for living ...lets go for it in a big way ...sending you my love and support ,,,twinkly mother hen ....
Yes 'Mother' aspects of life post Transplant do leave their mark on you but there is nothing to fear from the SCT itself. But it's important to keep the faith that it will be worth it in the end. I have a weak shandy now but my last proper drink was August 15. I'm not going back there. I only ever are an odd Maccy Ds I preferred home made steak burgers . But I know you are living proof that eating healthy brings benefits.
As soon as I get my sight back I'm going to try and live a fuller life and treat my lovely wife to some of the things we've missed out on these past couple years. Love xx
Good to see you are doing well Twinkly.
When I started out in the MPN community you were one of the first to 'great' me.
Sometimes I feel my 'MPN' journey is strange - initially when I was diagnosed MF+MDS-u and told I was probably looking down the barrel and on course for a rapid SCT I said to myself 'hey! how come others have medication that keeps them going for years - why not me?' (diagnostic to SCT 18 months, so pretty 'rushed'). On the positive side unlike yourself and many others I have not had to endure long winded treatments, next step questions, or trials.
Take care.
Crapaud
I have to tell you ,in the early days for me ,with regular venesection and taking blood thinning and hydra ,. I felt some days it was all too much for me to cope with .i was sad .but I talked to the doctors and was open about the side effects , so prof green at Cambridge .offered me the majic trial .ruxulitnib ....I was so very lucky ,my days became easier .i slept better .ate better ,my mood lifted ...I would say try a trial drug if offered .also take back control of your days by eating smaller snax ,,regularly .not 3 big meals a day .drink often ,juice and filtered water ,you will begin to feel stronger .try to stay positive ...life is so precious ....my love to you I'm sending ...twinkly xxx
Thanks Twinkly - a bit of love and affection goes a long way!
PV in partial remision
Pruritus. (Extreme itching) .Can no longer shower....
All about me and my Myelofibrosis
Alternative to Hydrea ?
ET JAK2 + 
