Eire

As a 'newbie' I hope I can share my experiences with you. I was diagnosed with MF 4 years ago and am now on a Clinical Trial taking Ruxolitinib (15mg in the morning and 15mg in the evening) I also take Panobinistat 25mg 3 days a week every other week!! The Panobinistat is quite severe but after 6 months on the trial I'm able to plan my life around the problems. My spleen has shrunk enormously but the downside is that I need a lot of Blood Transfusions. I joined this trial at stage 7 and was attending the hospital on a weekly basis for ECG's and blood tests. I now have a review once a month where I have an ECG, blood test and medical with my Haematologist. Because of the problems with low bloods I tend hospital weekly for blood tests and transfusion if needed. It would be good to share with any-one else on this trial?

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  • Hi Eire,

    I was diagnosed with MF just over 10 years ago. I am also on this trial based at a hospital in London. I live in the south of England. I have been on this trial for just over a year. I am on a lower dose of 10mg of Ruxolitinib twice a day and 10 mg of Panabinostat every other day every other week. I also had problems with the Panabinostat during the early months. I attend hospital on a monthly basis and am transfusion dependent which I have during my monthly visit. ( I was having more transfusions due to low blood counts before entering the trial) . I have not become transfusion dependent because of the trial. In general, since taking this medication I have felt very well and my symptoms - itchy skin - which had become very debilitating - had completely disappeared until recently, but now appears very occasionally and is bearable in comparison. My spleen has shrunk in size too. I hope you find this useful, as I certainly have. Please keep in touch.

  • Hi Eire, I have started on Ruxolitinib five weeks ago awaiting for results of an ultrasound to see how much my spleen may have shrunk, was 23 x10 five weeks ago, I have felt better in my self but hemaglobin 7.1. BP 106 over 58.

    Do you no if the spleen can ever shrink to normal size ?

    Am back to see heamtoligy in two weeks any advice is appreciated

  • Hey Norah - my spleen was 23 now at 17 but not moving anymore. Everyone is different yours may/may not shrink anymore time will tell. Your haemoglobin seems very low do you think you may need a blood transfusion? I have mine checked regularly but haven't had a trans since March - best ever!!!! Did they say anything about your blood levels they may measure it a different way in the UK. I would be transfused asap with levels like that but don't panic I'm sure it must be different with you. My bloods tend to be around the 9.2 mark but if they fall below 8.5 I would be transfused. Delighted you're getting on with the Rux and good luck with your next visit. Write down any questions you may have am always here to give you my side. Am in Wales on hols on the go all day coping really well - still in bed early but feeling great!!!

  • Thanks for your reply Erie, yes I thought I needed a transfusion.

    Heamatolist just said its a it low this time.

    She sent me for a ultrasound but not had results yet.

    I thought maybe she left me to see if it was Ruxolitinib, only been on the On it for five weeks.The last time it was 7.1. My gp sent me for a tranfusion.

    Been tied this week & going away to a caravan on Friday with hubby & kids. Not at clinic till 15 .Hope I can last out.

    We're going to presthaven sands here in the uk.😘

  • Hi Eire,

    I forgot to ask what stage are you at I was told am intameadit2 high risk.

    Very worrying I am gaudian to three children,

  • Hi Erie

    Forgot to say am on 20mg Ruxolitinib asprin & Anagrelide 0.5mg. Twice a day of each

  • Hi, I've never asked but I intend to on my next visit in sept. So hard to do but try not to dwell on what may happen. There are people on the site with MF for over 20 years and living decent lives. I'm 65 was up at 5.00am this morning been to the beach and walked miles am off to a car boot sale then a water park this pm. Yes I'm tired but is that MF, age or am I tired because I keep busy?? Live your life to the full enjoy the children who will be the ones to keep you going. I have 2 dogs and look after my gr'daughter probably wouldn't be so active if I didn't have them!!!! There is a lot of research going on for our disease who knows there could be a cure around the corner. Good luck be positive you have so much to live for!!!!!

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