Ruxolitinib For 5 Months Now With PV

[nj4291]

Hi. I posted a while back when I started this drug. I have been lucky to get full funding. Yesterday I went to clinic and for the first time all blood results were 'normal'. Due to my youngish age (40) and previous history of nasty clots I sometimes have a pint off just to be safe. I have continued to work (60 hours per week) for the whole time . Sweats gone,rashes gone, itching gone, sleep pattern normal , rarely tired probably due to work but exhausted certainly not. Sometimes get a little pins and needles but in all over the moon. I'm not suggesting this will work for everyone but if you get chance of a trial or funding then try it. If anyone wants any info let me know or if your off to London in November then just ask to meet up.

[Hidden]

Sounds wonderful. Think your youth has helped you to obtain this. My PV didn't come to a head and get diagnosed until I had turned 60 so along with others in my age category my future is not perceived as so valuable. I am thrilled for you. I have a reasonably good result with hydroxycarbamide but the side effects and potential mutations make it a risky option. I hope your feeling of good health continues along with your full life. All good wishes to you.

[MFBMT2011]

Good to hear. It is the same with those who take it with MF. Works for some not all. I am going in November as an ex-MF stem cell transplant survivor who buddies people from time to time, Happy to meet anyone there as we did last time; it is good to put a face to a name. Chris

[selkie]

I'm so delighted to hear this great response to Ruxo. I'm due to start on it after a bone bio on the 14th of Oct. Have been quite nervous thinking about it as so far have managed to avoide drugs. Like the others who've replied, i belong in the over 60s group. I'm hoping Ruxo will reduce my massively enlarged spleen. I'd be delighted if a return to a night's sleep were an additional bonus! I'm so impressed at your working week, what energy! Selkie

[nj4291 in reply to selkie]

Hi Selkie, Just to let you know my spleen has reduced in size by 40%

[selkie in reply to nj4291]

So encouraging. Thanks for telling me and fantastic for you. Enjoy this lease of life.

[ainslie]

how did you get approved for this drug, did you fail on HU and Interferon first?

[nj4291 in reply to ainslie]

Hi Ainslie, I started on Hydrox and was ok with venesections. But I have a great consultant.Applied for funding and hey presto. It helped about the age and that I lead a full life work wise etc

[aberbrothock]

Hello nj4291. Thanks for the response but it's my platelets that are the problem so I'll stick to the hydroxycarbamide and just have a break off it whenever they are not at such a risky stage. It is the side effects I get concerned about and the consultant not believing I should experience any.

[Kisses]

Kisses wife. Hi you progress is very encouraging to us kisses is now in his second week of ruxolitinib. And already feeling a slight difference in the spleen he's on it for mylofibrosis. And of course an enlarged spleen your very young to have to cope with this. I wish you well.

[Kisses]

Hi selfie my husband kisses has just started on ruxolinitib having been diagnosed with mylofibrosis. Eight months ago. His spleen is enlarged. And he recently had a 4cm splenic infarction his spleen is 14 would be interested to know how large your spleen was to start with. All the best. Kisses wife we also in the 60sbracket .

[Aime]

That's great news for you - so pleased. Will see you in November. Best wishes Aime

[StuEP]

Hi

I just wondered if you had any more updates for us? I'm 45 and have been on HC for 1.5 years but it's not helped at all with my symptoms, and probably made them worse. I want to ask my Consultant about Ruxo next time I see him. Could you give me some more info on the process you went through for funding? Thanks

[nj4291 in reply to StuEP]

Hi Stu,

Update for you. If you were to look at my blood results they are 'normal'. The drug for me has been wonderful. I now have funding until 2016 so the next few years are covered. Have no symptoms whatsoever. Don't know any long term issues but I am quite happy. Live an outstandingly normal life.

You need a good consultant and lead an active life yourself. I applied to my local authority cancer fund and was accepted. If you want help with this pm me.

[Twinkly]

I am taking the trial drug ruxolitinib ,I attend addenbrooks teaching hospital in Cambridge ,I have PV.and am Jak pos , I had venesection every visit ,,sometimes 4 weeks apart ,I did not have a good time taking hydro with blood thinning ,tablets,

The side effects were very difficult to live with, I volunteered to go on the Majic trial based in London. St. Thomases ,under the supervision of prof Clare Harrison ,all my notes were submitted to her , I had already been giving extra blood each visit to clinic for their use in research ,I had to agree to keep a day diary ,I gave a bone marrow test ,

More blood tests ! Then I was eventually accepted in August 2013 ,.yes it is so much better ,I'm very grateful to my team who monitor me,but I do feel an obligation to give this trial the best chance ,,so I eat healthy ,don't drink ,never indulge at McDonald's ,I exercise every day ,I walk my dogs ,drive myself. Lead a busy life,,I'm a good lab rat !!!

But I love life ,,,keep twinkling .....