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Polycythemia Vera enlarged spleen treatment

Posted , 8 users are following.

felicity09575
felicity09575

Diagnosed with PRV five years ago, I now have an enlarged spleen. Possibly about to start chemo treatment following a bone marrow biopsy/aspiration I wonder how long the treatment will go on?

0 likes, 25 replies

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  • leticia92303
    leticia92303 felicity09575

    Posted

    I have a question how did you know something was wrong with it? Did you have any pain, strange feeling or was it a basic exam? I went to my primary doctor because I would have a cuppa coffee in the morning and feel full like it is sitting in my throat, she said that it seemed slightly enlarged and wanted me to see my hemo\ oncologist....well she dismissed me and now I'm waiting to have an ultrasound a month later....please give me some insight

    • felicity09575
      felicity09575 leticia92303

      Posted

      My haemo consultant was concerned that I was experiencing pain in my left side, front and back which was referred in my shoulder and orderd an ultrasound scan which showed that the spleen had enlarged.  I am uncomfortable after eating and with tight waistbands. He palpated the spleen area and could feel the enlargement.
    • felicity09575
      felicity09575 leticia92303

      Posted

      I'm sorry I've not been able to respond to your question before now Leticia.  But yes, annoyingly there was only a little pain when the spleen was palpated but as I walked away from the consultant's office it hit me!

  • Zapamania
    Zapamania felicity09575

    Posted

    Hi Felicity have you been having phlebotomies and taking low dose aspirin until now?  Everyone here that has Pv has a different path.  Some people stay with phlebotomies and aspirin forever.  Others need meds either Hydroxyurea, interfuron or Jakafi.  I believe once you are put on meds, you stay on them. There is no cure so the meds are to slow down the progression of the disease.  I've been dx with Pv for 4 years and just started Jakafi 4 months ago.  I feel much better.  No more fatigue or itching.  Good luck with your path.  Zap

    • felicity09575
      felicity09575 Zapamania

      Posted

      Hi Zapmania, Yes I've had phlebotomies and warfarin (if have AF).  I like the hope that there will be no more fatigue or itching and hopefully no more pain and discomfort from the spleen enlargement.

    • Zapamania
      Zapamania felicity09575

      Posted

      Hi Felicity if your dr prescribes HU don't be afraid of it.  Most people do very well on it.  I couldn't tolerate it.  I had so much joint pain I couldn't get out of bed by the 5th day.  So the dr then prescribed Jakafi.  Much more tolerable for me and the itch and fatigue are gone.  My spleen was never enlarged.  There are pros and cons to these drugs like everything else.  You might do very well on HU as many people on this line do.  Hopefully you'll get relief.  Keep us posted on your condition.  Zap

  • ItchyChris
    ItchyChris felicity09575

    Posted

    It depends on the outcome of the biopsy. In my experience, if nothing out of the ordinary was found then your normal treatment will continue, if mylofibrosis then a short course of chemo my help but if AML then be prepared for the long haul but it is the less likely result.
  • sarah30079
    sarah30079 felicity09575

    Posted

    Hey Felicity, so sorry you had to go through this. Can i ask how the biopsy was as i need to have one. Pls be honest.
    • Zapamania
      Zapamania sarah30079

      Posted

      Hi Sarah. I just saw your post to felicity from 2 weeks ago asking her how the biopsy was as you need to have one.  So do I.  Wondering if you had the bmb and if so, how was it.  Thanks. Zap
    • felicity09575
      felicity09575 sarah30079

      Posted

      Hi Sarah, I've had two biopsies and can honeslty say that although it's not an experience I'd choose, it was bearable with deep local anaesthetic, gas and air, the kind hand hold of a nursing assistant and calm efficiency of the haemo consultant. I am waiting for the result of the latest biopsy.

    • Zapamania
      Zapamania felicity09575

      Posted

      Hi Felicity how long does it take to get bmb results?  I'm getting my first next week and I'm just wondering.  Zap

    • felicity09575
      felicity09575 Zapamania

      Posted

      Hi Zap, I expected my biopsy results 3 weeks ago but was told they weren't available when I saw my consultant. So I'm still waiting...  

    • ItchyChris
      ItchyChris felicity09575

      Posted

      I have found that Mark One eyeball results are instantaneous, early results take one to three weeks and full results five or more.

      ItchyChris

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