Has any one been told to prepare themselves for the possibility of a bone marrow transplant. I've had ET for 14years taking Hydrox in variou

Doses over the years. Told I had changed to MF only in November last year that was such a shock.Taken of Hydrox completely 4 weeks ago only take asprin at the moment. Due to anaemia sweats &fatigue & an enlarged spleen..its all happened so quickly. I feel they sew the seed to make you think talk to your family etc. I am still in deep shock. Has any one had the same thing happen to them. Also talk of perhaps taking the new drug Ruxolitinib.

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  • Hi Softail - yes I was told years ago by an expert, based on my test results and symptoms I would need a BMT within 3-5 yrs of my MF diagnosis. It's coming up 8 yrs now and in Dec13 my Hem suggested switching to Rux. . However I'm still waiting to go on it which Im hoping will be in July now. My latest Hem doesn't see the BMT route anytime soon so I take heart from that because a friend of mine is currently undergoing one and putting it mildly it's not an easy ride. Try to get on the Rux as its available through the Cancer Drug Fund. . Good Luck. JR

  • Thank you for your reply, Ruxolitinib is on the cards I think at my next visit.

  • Hi there JR,how are you? It's time for you to take your own advice my lovely.

    Write to your specialist ,plead if needs be ,to get on a list to trial ruxolitinib .you know it makes sense,don't you ? Your spleen is growing so now is your time,I am so well haven't been venesection for 9 months .my ultra sound scan for spleen and liver last month .results ,the doctor told me ," I have the inside of a 30 year old ..I want the same for you .please try my little Jedi ......Twinkly. Xx

  • Ay Up lass , lovely to hear from you. I have the funding in place so it should be all systems go in July. . though trust me I have been trying. . I have no expectation as everyone differs in their response to treatment and in that way I wont be disappointed if it doesn't produce results. However I will say that any drug has to be an improvement on these HU tabs that I've been reluctantly chuckin down me neck for 7plus yrs. . . Take care Twinkly xx

  • I've been on Hydrox for the last 12 years, in various doses. Started off half tablets every other day right up to 19 a week. They have stopped working no longer brings down platelets, spleen getting bigger. Have not taken any thing but asprin for four weeks strangely feeling ok apart from a few headaches. I have do have anaemia they can't seem to control. Very bad afternoon & night sweats. So used to them nearly forgot to mention them.

  • Hi Guys. Just read the comments on SCT and Ruxo and thought as a 3 year SCT survivor who talks to transplantees all over the world I would add my two pennorth. Ruxo is doing a great job on a lot of people but not all. I know of a couple who had to bail out quickly as they did not get on with it. It alleviates symptoms; it does not cure or halt the base disease. It is used to prep people for transplant too. I also know of others who have stopped and restarted Ruxo because of how it affected them. On the other side, while I know many successful transplantees, I also knew some who did not make it. However, these were people who left it as a last resort and went into transplant already quite ill. It is a tough but not insurmountable process. I guess I am simply trying to point out that we are all different and react differently to treatments. Donโ€™t hang everything on one as you may have to change horses in mid-stream, so find out about both so you can make an informed decision. Get good background from us patients but listen to the experts, not necessarily your common or garden Haematologist but the disease experts. Good luck with your decisions. Happy to discuss directly if it helps.

  • Hi MFBMT - I welcome your advice my friend as ever since I read one of your early posts on our forum I have drawn inspiration from your success. The points you make are all valid and it has crossed my mind many times over the past few years - especially when plagued with infection - that I should press to go ahead with BMT whilst Im reasonably fit enough to cope with it and not wait until im weakened.

    Your final comment is particularly relevant as i feel I am at or close to the stage where I would benefit from the opinion of an MPN expert as opposed to a generalist Hem or any one of his Registrars. No disrespect intended but after my recent experiences I've lost confidence. An example - after 7 yrs I had to ask again for a Jak test which was positive, something I didnt know but feel is important when considering Rux and just knowing I have the gene.

    I'm glad you continue to do well. Cheers JR

  • I feel it's very important to once again reiterate ,,the drugs we take are incredibly important to our well being ,yes that is true , But ,what we put in our mouth is also what makes us ,it's the food and drink that builds the cells to make us tick.if you put rubbish petrol in your car ,it will buck and kick ...then it will not run ,,it will clog up the engine till it stops ,,try reading the book ,from amerzon ,the china study,comprehensive implications.its so easy to read and understand, don't just rely on medication ,try to cleanse from the inside ,I assure you it helps ,,,twinkly. Xxxx

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