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Please can I introduce myself?

Posted , 6 users are following.

Rara1969
Rara1969

Hello. I have stumbled across this forum whilst researching my condition. Thank you all for your information, I have found it very useful and it's good to know I am not alone! I am 47, female and from the UK. I have PV and have tested positive for JAK2. My condition was diagnosed purely by accident and has come as a complete shock. I am currently receiving weekly/sometimes fortnightly venesections to get my levels to an acceptable level. One week ago, my level was 44.9 and I subsequently gave one pint of blood. This week, my reading was exactly the same. I am worried that this indicates that my condition is out of control! snd it won't be physically possible to maintain weekly venesections. My haematologist has mentioned the possibility of the chemo drug but I want to resist this as long as possible. I know it is still early days but can anyone advise if their levels settled down after a while.

Prior to my diagnosis, I had no symptoms and this has come as a bolt out of the blue.

Any advice would be gratefully received. Thank you.

0 likes, 12 replies

12 Replies

  • bill71415
    bill71415 Rara1969

    Posted

    Hello Rara, I too had no symptoms and my condition was found by my doctor during a routine blood test. Mine was managed for over 5 years with phlebotomies (venesections), initially every two weeks, then monthly, and shortly we were doing them every 2-3 months. Lately I've had peripheral pain in my feet so my Dr. has put me on Hydrea, which is likely the chemo drug you mentioned. Too soon for me to tell if the drug is helping my blood levels, but I have not had any negative side-effects either. I shared your concern and would look at all other options before starting any serious drug like Hydrea. That being said, if your Dr. says you need it and it helps manage your PV, then it might be necessary. My recommendation would be to find a PV specialist in the UK, as the condition is very rare and most general practice hemotologists may not know enough about managing it. I'm sure some of the UK folks on this forum can recommend someone. Best of luck in managing your condition.

    Regards,

    Bill

  • harrishill1
    harrishill1 Rara1969

    Posted

    hi Rara. Vebesections are fine at first, but your hematologist will probably put you on meds eventually, because it's not good to continue venesections for too long. I was eventually put on Hydroxyurea, and have done well on it for five years now. I too was caught by surprise when diagnosed. I was about 67 at the time. We can live a normal lifespan if treated. Best of luck,

    harrishill

  • peter98873
    peter98873 Rara1969

    Posted

    Hi Rara,

    Your experiences with PV are not unusual as it is a disease which does not generally appear until later in life.  Any treatment you receive will be geared to the tests you undergo by your Haematologist and are based on your personal factors and results.  I doubt your PV is out of control, most probaby the opposite .  Always listen to your Haematologists as these are the specialists in this field, and don't feel reticent to ask questions if you need any answers or have fears.  Your blood tests will settle and it may take a little while for the specialists to get your treatment right.  We have all been through this in the past.  PV symptoms can and do vary but sooner or later as you settle down to the treatment devised for you. Your visits to the hospital will become fewer but will always be a necessity.  It is unlikely you will be given a drug programme at your age as drug treatment is usually required much later on.  There are several different treatments available for the Haematologist to use and these will most likely be discussed with you.  PV is a very rare disease needing specialist control.  There is no reason why you should not live a long and healthy life but do look after yourself.  Keep as fit as you can and maintain a sensible diet.  In more recent times medical research has "found" Polycythemia and started to produce some very useful drugs that control the disorder but most are still in the trial stages.  If any strange symptoms do arise that you don't understand then you should contact your specialist.  There is heaps of advice on this forum and many of the contributors have been handling PV for many years.  PV is one of a group of similar diseases classed as MPN's.  Due to the rarity of PV it is unlikely you will personally meet another with the same complaint.

    I have yet to meet one.  Hope this will ease your thoughts.   As you are in UK you can obtain some excellent  booklets on this subject from your Haematology Dept. at the NHS hospital.  Good luck and best wishes.

     

  • Scotslassie
    Scotslassie Rara1969

    Posted

    Hi Rara

    I was diagnosed over 5 years ago with PV jak 2 neg..Haematoligist said neg and positive are nothing to worry about.

    I had venesections daily to get my levels down.

    I only have them occasionally now.

    I have been on Hydre all the time with no side effects.

    I am 66

  • suki8786
    suki8786 Rara1969

    Posted

    Hi Rara, i also live in the UK, Birmingham. I was diagnosed a year ago and have started chemo drugs. Like you i wanted to put them off as long as possoble but my platlet count was too high so needed the drugs. Feel free to mesg me if you have any questions, like you i am younh at 42 to have this condition, ive had it a lot longer than my official diagnosis.

    Suki

    • peter98873
      peter98873 suki8786

      Posted

      Hi Suki,

      It is not unusual when diagnosed with PV that you begin to realise that the symptoms have affected you often long beforehand.  I know that I had the PV symptoms at least twenty years before the actual diagnosis and these were of such a nature as to not cause me any dificulties as they were very mild and I knew not why they were occurring.  You will have undergione tests with your haematologist before any diagnosis was offered but it is these tests on which your current treatment is founded.  As you are aware there are different treatments you could have been offered but your haematologist has recommended drug therapy, probably Hydroxycarbamide.  Many patients have no difficulty using this drug, it has been around a long time now.  It is the side effects one can achive whilst taking this drug that tends to affect people so if you receive any unwelcome effects you should discuss these with your specialist who can often adjust the dose to suit.  You may be aware that PV is generally considered present at birth caused by a defect in the JAK2 gene but in many cases the disorder is not apparent until much later in life.  There is no current cure but newer treatments are being researched and should become available to use in the future.  You should be able to live to a good age with proper treatment and an active one at that.  Your NHS hospital should be able to supply you with some excellent booklets to learn more about your disorder (and other MPN's which is the group to which PV belongs).  Your haematologist should be able to provide these).  PV is not considered an hereditary disease and is not transferrable.  It is only in more recent times that PV has come to the fore and received the attention it so deserves.  There is plenty of information on this forum which can assist you to understand more supplied by patients who have been obliged to deal with the same problems themselves.  A steady platelet count is desirable as they cause the blood to clot, but an excessive amount of these can indicate thrombosis.  Platelets numbers will vary anyway.  Your haematologist will be more than aware of this.   Hope this helps .  Best wishes,

      .

      Peter.

    • Rara1969
      Rara1969 suki8786

      Posted

      Thank you Suki for this information. I might indeed contact you in the future if it looks like I might need the chemo drug. Whilst I am obviously sorry you have this condition also, it is reassuring to learn I am not alone since you are the first fellow sufferer I have come across of a similar age.

      Best Wishes

  • Rara1969
    Rara1969

    Posted

    Thank you so much for all your lovely comments and information guys. It really is a comfort knowing I'm not alone! I originally posted my comments in desperation because after 1 venesection and one week, my reading was the same. In my panic, I thought this indicated that I would need 1 venesection per week. BUT you were right - I am now a further 2 weeks down the line and whilst it was up slightly, I still didn't need another venesection this week. We are now going to be brave and leave it two weeks before my next appointment. This will mean it will be 1 month between blood lets which is more sustainable.

    You are all so kind. Thank you.

  • Scotslassie
    Scotslassie Rara1969

    Posted

    Hi Rara,

    When I was 1st diagnosed I had to have a venesection everyday for nearly 2 weeks.Then when my levels were acceptable I only had to have them every 3 months, but I haven't had to have any since.

    I was diagnosed 4 years ago now.

    • Rara1969
      Rara1969 Scotslassie

      Posted

      Thanks very much. I suppose our bodies work in mysterious ways! And no two cases are the same. I guess only time will tell. I am now under the care of a great blood clinic and team of haematologists and feel somewhat calmer about things now after the initial shock.
    • Scotslassie
      Scotslassie Rara1969

      Posted

      That's great.

      I am also on Hydrea and have had no problems .

      Take care xx

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