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polycythemia vera

Posted , 19 users are following.

bikerflorist
bikerflorist

i have been living with this for 2yrs now and i must say with no help from my doctors, i know its rare and not many women suffer with it but are there any on here ? am getting a bit desperate now feeling really un well 

thanks 

5 likes, 101 replies

101 Replies

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  • frances20411
    frances20411 bikerflorist

    Posted

    Hi! I am a senior lady who has had PV for 3yrs and a few years before I found I had that I was having severe nose bleeds and I am also in remission of bladder and colon cancer.  I live in America and my HCT number has been in the high 50's but my target is 44HCT and I am now below that.  I won't take the hydroxyurea since I don['t like the possible side effects so I will have either weekly or monthly phlebotomies depending on the lab. report.  I have Stopped eatting red meat and drink a great deal of water Only...and walk at least 45 min. a day.

    PV is a frustrating disease but I will beat it God willing..not cured but manageable.

    i also take a daily baby aspirin and eat healthy.

    • clem19079
      clem19079 frances20411

      Posted

      Sorry things have gone so badly wrong for you. I take hydrea , though I don't seem to have any side effects. There is a drug called ruxilitnib , it's avail in the u.s. apparently it's a wonder drug. I won't take because of the number of bone marrow tests that I would have to endure. Best wishes from me here in belfast Ireland.
    • frances20411
      frances20411 clem19079

      Posted

      Thank you for your concern..but I feel rather well considering.  My mother's family is from souther Ireland (Cork and Mayo) I am first born state side.

      My father is English.  If you would what is your HCT numbers???

      and do you eat red meat or take a baby aspirin and do you have phlebotomies.  Thank you.

    • njp2020
      njp2020 frances20411

      Posted

      Hi Frances,

      i am also a senior and have had 4 phlebotomies so far. The doctor just prescribed hydroxyurea, but after reading about side affects, I am afraid to take it. I wonder if we can just do the phlebotomy only, and leave off the chemo drugs?

    • frances20411
      frances20411 njp2020

      Posted

      Hi! I understand your plight.  I just wrote a lengthy message to bikeflorist

      so if you would find that and read it...it should answer your concern.

      Re: phlebotomy...I told the doctor (yes! I told the doctor) that I wanted

      weekly lab and have a phlebotomy only if mly HCT number was over 44

      I drink lots and lots of waters, walk everyday, take a baby aspirin daily

      and one iron pill (time release) weekly since phlebotomy does not touch the clotting element (PIT) in your blood which should never go over 700.. I NEVER eat red meat and this is working for me since like you I will NOT TAKE the chemo med. To me this is exchanging one problem for another.  Good luck!!

  • frances20411
    frances20411 bikerflorist

    Posted

    I am a senior lady who has had 2 other cancers (both in remission).  I have had PV for almost 3 yrs. and it is a learning experience.  Doctors can only guide you but you must be the leader in your own care.  It has taken time to stand on my own but I TOLD THE DOCTOR...what I would do and what I would not do.  I wanted a weekly seriers of lab with a phlebotomy (I live in USA) ONLY if my HCT number was over 44...this is not the way I started when under doctor's care.

    but it is now working for me.  I take a daily baby aspirin and drink lots and lots of water @60 to 70 ozs. a day and the miracle for me was to STOP eatting RED MEAT.  i  don't know if this is a "cure" but for me my HCT number has dropped

    below 44.  Remember that phlebotomy does NOT touch the clotting number which is PIT and I do take 1 time release iron pill a week and the PIT number should NEVER go over 700. My PIT has stayed around 500.  I had severe and I mean severe nose bleeds but they also seem to have subsided.  Follow your gut feelings since you know yourself better than anyone.  I will NOT TAKE the chemo

    med Hydro due to the side effect that could happen.  I don't want to trade in one problem for another.  Good luck!!

     

    • clem19079
      clem19079 frances20411

      Posted

      You shouldn't be taking iron tablets at all. Your symptoms can hopefully relieved though there is no cure for PV from what I believe, science barely understands it. Be well
    • frances20411
      frances20411 clem19079

      Posted

      HI! at one time I would agree with you about Iron but a scientist friend told me that the clotting agent in the blood (not touched by a phlebotomy)

      PIT should never go over 700 and if it does Usually it is due to a LACK of iron in the blood...so I will continue to take 1 iron (time release) weekly since I do not want clots DVT (which I have had).  My HCT is dropping and until the nubers change this is the program I will stay on.  Thank you for your concern.

    • alison_29881
      alison_29881 frances20411

      Posted

      Hi, What is PIT? My latest "scores" are: HB 142; WBC 9.7; Neutrophils 7.7; Platelets 590; HCT 0.465 - they want the HCT down to 0.42.  Due another venesection (phlebotomy) in three days. Will see what test then shows.

      Alison

    • alison_29881
      alison_29881 frances20411

      Posted

      oh and also I'm on baby aspirin and drinking 3 Litres of water daily (with the toilet nearby!!)
  • harrishill1
    harrishill1 bikerflorist

    Posted

    Hi bikerflorist. I have read online that if we replace the low iron, it will make our blood count go high. I have been on Hydroxyurea for 4 yrs. It usually keeps my blood around 44. Occasionally, I've taken too many vitamins, and then needed a phlebotomy. I would ask my Haematologist before replacing the iron. He is a specialist who knows what he is doing. Mine is brilliant. He follows up on my condition very carefully. He knows about latest treatments. He knows which patients need the meds and which ones don't. I always ask his advice. I feel so good, I still take long walks, work out at curves almost daily, and do Zumba twice a week. Sure, I do take naps in the afternoon, but I am doing extremely well.

    Good luck, be happy!

    harrishill   

    • frances20411
      frances20411 harrishill1

      Posted

      I read your comment with great interest.  I do NOT take Hydrox and never have...I do everything that you do walking, naps etc.  I am a senior with 2 prior cancers (now in remission) and with lab and necessary phlebotomies when the HCT is 44 or higher I am doing well. I have STOPPED eating red meat and drinking plently of water I find that I am doing very well..no chemo med..don't like the possilbe side effects.  I conclude that everyone's body reacts

      in a different manner to treatments.  Baby aspirin, walks, water, no red meats, weekly labs, and weekly iron (time release).  I guess what is one man's poison is another man's medicine.  Thank you for your view.

  • joycem
    joycem bikerflorist

    Posted

    Hi, Im new to PV and a woman.  Are you feeling any better now? I do hope so. Reading through this forum I'm quickly coming to the conclusion that I will never feel the same again but that some days will be better than others.  I have noticed there are not many women on the forum.  No idea why it affects more men than women (makes a change!) but I also read that it is more noted in the Jewish community...absolutely no idea why.

    • Zapamania
      Zapamania joycem

      Posted

      Hi joy I'm new to this forum also.  I am a female living in the US.  I'm not Jewish to my knowledge but there is a piece of my dna on my fathers side that is missing. So you never know.  I agree with you and have come to the same conclusion that I will ever feel like pre-Pv me again.  It's quite depressing.  I still haven't gotten over the why me stage yet.  I think men fair better than women with this disease.  Please reply if you'd like.  I'm interested in speaking with women with Pv.  Linda

  • Zapamania
    Zapamania bikerflorist

    Posted

    Hi biker I just joined this group 2 days ago.  I've had Pv for 4 years now and I'm a female.  I would be very happy to speak with you about symptoms Drs or anything else you would like to discuss about Pv.  Linda

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