Here we go again

So I saw Prof Harrison the other day and it was decided I am being put forward for the Majic trial, pending I'm selected am the liver specialist says yes....I hope I get the chance to go on the trial, Hydroxycarbamide isn't working for me anymore.....interferon didn't work either.... There gonna run out of options at this rate!! i hope everyone is doing ok and smiling xx

11 Replies

  • Hope it works for you!! good luck! X

  • Now you must keep strong and positive ! The trial is a difficult time at the beginning as testing needs to be done and lots of questions ....but once underway ,you need to work with the drug . I don't drink alcohol ,or eat any junk food .cut right down on dairy ,juice and smoothy .and drink that twice a day ..cut down tea and coffee ,use healthy alternatives ,,fruit teas ,juice , honey and fresh lemons ,...make soup ,and use it to warm up in the cold weather ..your eyes will sparkle ,and your energy will return ..try to sleep warm and relaxed after a soothing bath. Get those nails done at the shop pamper yourself when ever you can ..lovely girl are now in safe hands ..the lady who takes care of you has already earned her wings !! Love is coming from twinkly ...xxxx

  • thinking of you and agree with twinkly stay positive I am a great believer that the mind a wonder drug in itself love and hugs michelle

  • Hi Chelle,

    Heartily agree with Violet the Twinkle!

    I'm still on hydroxicarbamide but it's so important to look after yourself and cut out all the rubbish from your diet - inc alcohol I'm afraid. I did 5 years ago and now don't even like the taste! Sounds really hard, but what's more important - a glass of wine etc or your health? Sorry, don't mean to preach.

    There was an amazing article in the telegraph last weekend - and in the you magazine - about a girl called Ella who was diagnosed with a really rare condition.

    The doctors couldn't help her, but she cured herself by going on a really strict diet.

    ( I did the same when a ghastly antibiotic sent me into meltdown - the doctors wanted to put me on a load of other drugs inc an antidepressant but I decided to try cutting out rubbish, dairy, gluten from my diet and go organic - best thing I ever did, and it actually isn't that much more expensive. Maybe £10 a week. £500 a year to improve my health, what's to argue with?

    Google you magazine deliciously Ella. Interesting article, and I've just ordered her recipe book - you might like this as well Violet.... Available on Amazon.

    I'm certainly not a vegan, but when you've read the article you tend to think that this young lady is doing something right.

    Anyway, best of luck with the trial, I know 3 people now who are on it and going great guns.



  • Wishing you well and that this this drug will work for you. Love and blessings

  • Keeping my fingers crossed for you Chelle. Hope it all goes well. thinking of you. Let us know how it goes. Take care Liz C xxx

  • Good luck with it all. I too am in the position of hydroxy not working any longer and am due bone marrow biopsy to see what's going on. Consultant mentioned anagralide but also ruxlitinib. Anyway biopsy first. Wishing you all the best. Jan

  • Hey Chelle - You really do deserve a break and as others say I do hope you are eligible for the Trial and that if you are on Rux it alleviates your symptoms and does the business. . I know how lucky I feel to be taking it after the Hydrox and I reached the end of the road. .

    Although I'm having a few ups and downs here and there I can assure you I'm ok and still smiling Thanks. . . I like the fact you like so many on here remain upbeat and cheerful in the face of difficult circumstances. . Fair Play to you.

    Take Care. JR

  • Hi Chelle,

    I was wondering how you were doing. Long time no see! I hope you get onto the trial. We'll not give up hope just yet! Thinking about you.


  • Chelle, really hope it works well for you with the Rux. I have been on the trial since October with no looking back at all. The Prof is such a generously positive and inspiring person, as are her team, you just know you are in safe hands. My biggest problem had been the anaemia but that is now on the way 'up'. I have not changed my life at all except I am feeling more and more the person I was before PV and MF. I had become someone who seemed to need so much sleep, no energy even then. I had completely lost the zest for living. Now I run up the four flights of stairs to the clinic!

    Thinking of you.


  • Thanks everyone. I am now just waiting on hearing from the trials team. I am lucky in a sense; I don't drink I gave it up in 2013, when I found out I had liver disease.....I eat pretty clean too. I shall keep you all posted. Thank you for your kind messages. xx

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