pv ,mf1 ,jak2 positiv,jakavi,femal,

iwas diagnosed pv in2012.,first treatment phlebotomies later hu.in2015 my illness progressed:if felt more exhausted and had temperature for weeks .a second bone marrow biobsy showed pv and mf1.now it take jakavi and feeling better.i am63 and decided this year to stop my work as adoctor for paediatrics in order to have less stress and infections.

13 Replies

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  • Hello Angelikadrschell25, welcome to our forum, glad to hear that you are now feeling better. Maz

  • Hi, I hope retirement helps you feel better. I'm retired and now wonder how I fitted time in for work!! Best Wishes for the future.

  • Welcome to the club Angela, though I know it's not one we would chose to join. You will find lots of useful information here and help and support when you need it. I was diagnosed 2012, though I have ET, jak 2 positive, on HU too. I was so glad to find site, it great to find people who know what you are going through. Pleased things getting better for you. Take Care. Liz

  • hello liz,it is good to into come into contact with people who suffer from mpn tough.it is such a rare disease.i never met a patient with mpn.at the time there is a big change in possible therapies.this is good for us.best wishes angelika

  • Hello Angela,

    I was also originally diagnosed in 2012 with PV and now MF also taking Ruxolitinib for 9mnths and notice how much better I feel for it. I should think it will make a difference for you not to be open to infections in such a degree when you retire. Wish you all the best and hope you gain lots of tips from this forum. As Liz above said, not a club you would have chosen to join but nevertheless, jolly pleased it's here. I am 68 by the way.

    Linds

  • hello linds,i am glad that there now is the possibility to treat mpn with jakavi.i feel really better now.best wishes angelika

  • Hello Angela. I'm sure you will miss your practice and the children, but it sounds like a well thought out decision. I have ET, and I am older-70, I just started on a drug two months ago. I'm glad you are feeling better. This is a very supportive friendly forum, welcome to it. Do you have some hobbies and interests you are thinking you want to do now that you've retired? Jean

  • hello jean.it is really a big change for me ,.but work in my praxis was hard for me during the last year as i did not feel well and was always very tired.now i can take a rest when i feel like.i have the time to organise things in our household ,i read a lot and enjoy the nature on the short walks with our old dog. .i feel better now and have to look for a new hobby.my husband retired 5 years ago.we both are interested in natural food ,nature and art.greetings angelika

  • Enjoy your new life. I read a lot, garden and spend time with my grandchildren. I haven't recently but about a year ago I took some online short courses from Future Learn which I enjoyed. The courses re free and lots of different subjects. Anyway, all good wishes. Jean

  • Welcome Angela , same age as myself , only diagnosed last year, my heamatologist told me about this site , and its a great support , all lovely people on here ,always here for you im jak2 pos with ET ,but think jurys out on this as my Gp thinks its more pv i havent had a bone biopsy yet ! best wishes Holly x

  • hello holly,a bone marrow biopsy is nothing to be afraid of.when you have pv your blood test show encreasing hb and white blood cells and not only high plateletsdeed you need any phlebotomies?.best wishes for you too.angelika

  • Thanks Angelika, No havent had phlebotomies! thanks though for reasurances regarding bone marrow b , at minute my white cells okay . Holly

  • Hello Angela, like the others have said a big welcome to the forum. You will get tons of support from lots of lovely people who understand exactly what you are going through and how to make you quite often laugh and feel better.

    I'm 57 diagnosed with PV in 2012, still working but finding it harder to do so. I hope you enjoy your retirement now that you have made that decision. Take care, best wishes Aime x

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