Re Celebrating new arrival

Thank you all, 

I have conciderd my self an old timer and an expert in MPN's and am finding it hard to deal with the progression to PV, ET was a walk in the park compared to how I feel now! I am aware of all the advice I have previously given yet am finding it hard to practice what I preach, Now I am wanting support I am feeling guilty for only reading most posts and not replying to them. Good luck to all. Ourlife 

11 Replies

  • Hi there! I have ET and none of us know if/when things will progress, so you have all my sympathy! I hope you're happy with your treatment, at least you know (more or less) where you are. 

    Try to be positive, easier said than done, but people on here are rooting for you, and we are all interested in how you will cope and what your treatment will consist of - mainly because we're all nosy! 

    Best wishes for the future, keep us all updated! 

    Lizzie 😄👍

  • Hi there, sounds like you are struggling to adjust to your diagnosis.  I hadnt realised PV was a progression of ET? I was diagnosed with PV last september and am lucky to be treated with aspirin and venesection so far. I had a lot of anxiety and more symptoms to begin with but improved massively once my bloods were under control.  I hope that you get the right treatment and start to feel better soon.  Xx

  • No need to feel guilty - the great thing about this forum is that we can all use it both to give and to seek support depending on our current situation. After 13 years with ET I live with it quite easily but am conscious that progression to another MPN is always a possibility and will open up new challenges and concerns. Best of luck, Andy

  • Andy I know your on Pegasy and have been for a long while, have you ever considered stopping,. There has been much talk about remission after a couple of years?? Just wondering if you or your Doctors ever considered stopping the injections. My Hematologist said he now does not keep people on it long term. Mickey

  • Hi Mickey - we've talked about it but my counts haven't been quite low enough for a sustained period yet - still hoping for that one day..!

    Best wishes


  • Don't feel guilty about a thing everyone does things differently , I sometimes think not replying leaves it open to free expression other times I feel I should make a personal response so do as you do. Every new obstacle takes time to adjust and hopefully once your meds are balanced you will feel more like yourself.

    Good luck and keep smiling .

  • Good luck. I hope you have some good advice and option re treatments.

  • Hi am one of these too not replyed or posted not done in an age!! But reading your post has made me do so Thankyou! No guilt as we do when it's needed and knowing MPN is there for use is great! Am 11years with M PN 7Years ET and then a change to post ET MF am still working dependent on transfusion and 75ml Asprin at the time of MF diagnose I was very anxious but am living a good life and hope to have meny more years doing so ! Best wishes keep strong 😀

  • Are they any answers to progression? Like ET to PV or someone I know was just diagnosed with ET and now they say she has MF. Its all scary and we become crazy with it all. Is there any research on the progression rate and what or if could cause it to happen? I am so sorry yours progressed, you were so young when you first got it, most of us are older. Best wishes to you! I heard Jakifi is the medicine to use for PV but not sure and interferon 2a and 2b pegasy.

  • Hi Mickey64,

    I am on Peg and that is the worrying part my platelets are well controlled at 285 yet packet cell volume red cells and haemoglobin are unstable at the moment.

    I am under the impresion that about 10% of ET patients progress but would not bet on it and not sure of any research.


  • Hi. I had ET in the 70's and PV since 2000. Massive phlebotomy (5# removed twice a week) worked for years....then left me with severe osteoporosis and One iron cell. It was good in the beginning... but after 8yrs of it... it took its toll. Couldn't take hydroxyurea (gout) and was started on KL Jakafi. Had one month to live at that point. I gained my weight back. Hair grew back in, got off my back. Blood work looks perfect now. No side effects at all. Prior to Jakafi I had 24hrs of chest pain, shortness of breath, lethargy, and spinal compressions due to yrs of phlebotomy. Also... I was a bad case. Blood wouldn't go thru 1/4 inch tubing at start of phlebotomy in 2000. Everything has a plus and a minus...but now... I take a pill (Jakafi) and me and my blood work look and feel like kids again. That pill has the piece I was missing. I went from not being able to walk the dog at get the mail to surfing

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