Hi Guys, Not sure if this has been posted but the early results of this trial look good. Im not too savvy and couldn't get the link to work but if you just google the details below you should find a number of refs to it. It is well reported for those interested and who may not have seen it.
Who knows if the Ruxo does have a wider application it may bring the cost down over time and made more widely available. . I do hope so. Cheers
novartis pv phase 3 trial results
Hi
If you go on the link thenewsmarket.com/Novartis and then scroll down to the appropriate headline -
Novartis Drug Jakavi® Improved Overall Survival of Patients with Myelofibrosis in Four Separate Analyses of Long-Term Phase III
You should find it.
Hope this helps.
A
Hi JR, How are you getting on? Have you started on Ruxolitinib yet? It is clearly not the absolute answer for me as my symptoms are coming back and spleen not shrunk! Living up here in the beautiful wilds of Scotland I can't get on to any 'ruxolitinib plus' trials that are apparently happening in Birmingham and London. After the recent withdrawals of drugs on trials due to liver toxicity issues I am a bit wary of stage 1&2 trials but feel a bit guilty about that as someone has to go in for these trials so we can all benefit. I will have to cross that bridge if/when I am offered a place on a trial I guess. I agree that ruxolitinib needs to come down in price and hope that any potential wider application for the drug will result in just that happening. It certainly appears to the layperson's eye(me!) that the drug is a cash cow for Incyte/Novartis right now. I am very lucky to have had the chance to try it even if it has not been the answer for me.
Keep well
Hello beetle my husband has been on ruxolitinib now for ten months his spleen has gone from 19cm to 7 cm. so it's working for him. It's unfortunate It's not worked for you I assume you have mylofib
Mylofibrosis how long have you been diagnosed all the best for the future. Kisses
Hi beetle.you may be aware I'm also taking the drug ruxolitinib ,as a trial for addenbrooks hospital Cambridge ,under the care of prof green ,and his Majic team .
You say it doesn't suit you ,,can I ask you why ? I'm having a few problems myself now,
It's been 9 months ,I do get breathless on uphill walks always had joints wearing out about 10 years ,,I'm very active and busy ,but I'm concerned about reflux acid and bloating ..( not boating ) JR..put on your SPECS....any similar problems for you ???
Hi Twinkly. Ruxolitinib has vastly improved my blood results - not to be sneezed at - however, I have had no reduction in spleen size and am experiencing a return of symptoms after just 8 months on the drug. Blood numbers permitting, I think we play with the dose a bit to see if we can get more symptom (itching, fatigue, spleen discomfort) relief again.
My blood results are now excellent,I haven't had venesection for 9 months ,the doctors are very pleased ,I keep a diary every day ,I was being bled every 4 weeks,I do restrict certain foods from my healthy diet,almost vegetarian now,avoid dairy,it's the oily foods I cannot take now,but I'm so much better than when I was taking hydra,,I was only half awake then ,,,,xx
We read wonderful things about this drug, does anyone have a view that taking a jak inhibitor will become the norm for people with and MPD/N in future? You read some people have seen a reversal in bone marrow scarring (MF Patients), it all sounds amazing.
Is there any evidence yet that they only work for so long, or is it likely they might continue to work as long as you take them (potentially for the rest of your life?). Maybe its all too early to say.
Sometimes its confusing reading reports as they often have a lot of 'technobabble'
I told my Heme that i would like to be considered for a trial however on reading the requirements for trials it seems you have to have quiet a large degree of symptoms, which i dont have, other than my enlarged spleen.
I guess that does make sense as they need to measure the response of the drug, and of course there are people in a much worse position to me that im sure can benefit more.
It would be great to think that one day though in the not to distant future we can all pop a daily pill and whilst we may not be cured as such, it 'fixes' us for as long as we take it.
Hi Paul42. From what I have read it is not all that uncommon for symptoms to start returning for some people after varying lengths of time on this particular drug although others are having quite remarkable success with it. I think that is why there are combinations of other drugs plus ruxolitinib on trial at the moment
Thanks beetle. Good luck with your treatment.
Hey Thanks for your responses out there. Hi Beetle - Ive not yet started Rux as my new Hem has not got it sorted however apart from my high white cell count my other counts are good, my spleen as i said before is below naval and uncomfortable at best, i burn up and itch etc so Im still expecting to go on it soon. Back in May. I am sorry that you aren't getting the full benefit that Rux seems to offer esp shrinking your spleen and I take the point about long term use that Paul mentioned. I guess only time will tell but it's a hell of a start considering the limited choice over the last 20 yrs.
Im actually laid up exhausted with what for most peops would be a cold but when I get one it's a sniffle day1, full on day2, coughing up nasty and bed by day3. .And it hangs on for weeks. I wonder if I would shake it off or not get it as bad with Rux. I was just thinking how well Id done to avoid infection all Winter as last year I one after another into May.
Dearest Twinkly you'll be pleased to learn Im still managing a couple of pints but in me pit rather than down the Club where I do my daily banking behind the bar. Hope your bloating has improved.
Take Care All
Sorry to hear you have manflu, JR. Hope you get excellent results with the Rux when you start it. It certainly controlled my itch and burn up to begin with but they are now coming back. Just waiting to hear about dose increase. I have, however had more infections of one kind or another on Rux than I did on HU. My Haem says they don't really understand why this is happening to some folk but thinks it might be that the drug interferes with the way white cells communicate with each other! Hope yours carry on talking!!
Take care
Hi you JR. As my ol mum used to say ," you shouldn't drink out of wet glasses" ,
I'm now taking up rowing lessons ,,to help with my boating,,
Be a good boy Have a nice blow ,,,,
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