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Just won the million! Platelets.

Posted , 6 users are following.

marie-jos6518
marie-jos6518

Hi,

I love to read from all of you. I'm just back from a visit to my hæmatologist and the news are not great. I was hoping that the fact I missed a phlebotomy (because my hematocrit was ok) would help my platelets go down but they went up. Passed the million. My dr decided to stop the phlebotomies for that reason and because my iron level is way to low (12). He also said something about my white blood cells but I'm not sure if they where too hi or low.

I see him in two weeks because he wanted to talk with collegues about me. He seems ready to put me on Hydrea or Jakafi. That worries me.

Any of you went straight to Jakafi without trying Hydrea? Looks like the side effects are more tolerable. I'm open to any suggestions.

Marie

0 likes, 15 replies

15 Replies

  • frances20411
    frances20411 marie-jos6518

    Posted

    My heart goes out to you.  I have been fighting the platelet battle/v doctors for

    several years.  I can only tell you my experiences.  First, I have limited my intake

    of iron from ALL SOURCES...e.g. red meats, veggies supplements.  I walk as much

    as possible and drink as much water as I can tolerate..(which sadly lis probably not enough). I eat raw garlic (comes in a citrus liquie) drink Pommagranite juice

    I am not sure if any of this is of any value but my numbers have come down somewhat (750 I read is the danger zone)..I run from 550 to 650.. I have been hospitalized with DVT a few times (not recently) and ALWAYS WEAR 30gg support hose.  I also undersand that Phlebotomies increase platelets.  Somehwere on this site I read that.  I will try anything except for Hydrea etc.

    I do not like my health to be compromised but this appears to be the FIRST THING that doctors go for.  Those meds probably work in the short term but the long term concerns me.  Have you had a Complete blood panel done and if so

    you ARE ENTITLED to a printed copy of those results.  Good luck!!

  • Zapamania
    Zapamania marie-jos6518

    Posted

    Hi Marie I was in your position last year.  My platelets were going up and down for quite a few years.  And then, like you, I also hit a million.  I changed Drs from a hemotologisrt to an MPN specialist.  From my understanding, at least here in the US, you have to go on HU before you can get Jakafi. So I went on HU for 5 days and couldn't tolerate it whatsoever.  My whole body ached.  Of course everyone is different and many do very well on HU. Went back to dr and he then prescribed Jakafi.  It is much more tolerable for me and my platelets are going down slowly.  In 4 months they went from 1 mil to 588.  I go March 2 for my next blood check.  Best of luck to you.  Zap

    • frances20411
      frances20411 Zapamania

      Posted

      HI! i am sure the abbrev. MPN is common but I do not know what it

      stands for...please clarify.   Thank you.  I always enjoy your commens.

    • Zapamania
      Zapamania frances20411

      Posted

      Hi Frances MPN stands for myleoprolifitive neoplasms which is the catagories Pv, Et, MF are considered.  There are Drs that only treat MPNs and are more advanced in our disease. A hemotologisrt or oncologist treats many different cancers and blood disorders.  Zap
    • Zapamania
      Zapamania

      Posted

      Sorry Frances just realized I spelled it wrong Correct myeloproliferative neoplasms.  In case you want to look it up.  Zap
    • frances20411
      frances20411 Zapamania

      Posted

      Hi! Maybe I am wrong but even though you go to an MPN you are on

      Hydrox...that is the same med that I refused from the onocologist.

      so it does not appear that there is much difference between doctors. 

    • marie-jos6518
      marie-jos6518 Zapamania

      Posted

      Hi Zap,

      I am in Canada and it is the same here. My insurance won't cover it unless my dr signs a form that I don't tolerate Hydrea. From what I read on this forum, Jakafi is much more tolerable. One of the thing that bothers me in Hydrea is the hair loss (my dr says it doesn't happen very often) because the women in my family have a genetic hair loss desorder and I might be next. I don't want to trigger it with a med especially when Jakafi is known to help hair growth. I see my see my dr again on the 13 th.

      Thank you for your reply

    • peter98873
      peter98873 frances20411

      Posted

      Hi Frances.  The reason Hydroxycarbamide (Urea) was/is  prescribed is simple, it is the best available treatment for PV etc.  That is until Ruxolitinib was introduced although not generally at this particular time.  For those on venesections this does not apparently apply.  Other preparations do exist but I am told these are not as effective at treating PV.  Other drugs are in the pipeline but not authorised for general usage.  I feel that the best course is to continue as we do and for patients, such as yourself and me, to give their honest views and experiences for others to digest and make their own decisions as to what they can accept.  I think we all do this quite well but with the differences encountered by newer patients they are a bit overawed by it all.  We can but try.
    • peter98873
      peter98873 marie-jos6518

      Posted

      Hi Marie-Jos.

      I took Hydroxycarbamide(Urea) for many years and hair loss was not a problem.  As your doctor says, it is not a done deal when taking this medication.  My hair loss was absolutely minimal and it did recover.  Sadly, Ruxolitinib (Jakavi) is a very new addition to treat PV and on the expensive list until other preparations can be introduced or the costs can be brought down.

    • Zapamania
      Zapamania frances20411

      Posted

      Hi Frances there is a huge difference between an oncologist and an MPN specialist.  An oncologist treats all cancers an MPN oncologist just treats our disease.  They know way more informed in our disease and all the latest drugs.  I live in Nj and am planning on going to New York to one of the top specialist in the country. There is Jakafi and pegylated interfuron which from what I understand can reverse some of our bone marrow damage.  HU & Jakafi are just slowing the progression.  

    • frances20411
      frances20411 Zapamania

      Posted

      I know that there is a difference between doctors and their specialities

      but what I thought what I was pointing out is they still prescripbe those

      chemo type meds.  I am just changing my diet to Vegan and my

      numbers are coming down Naturally.  Mabe my approach will not work

      for everyone but I do not want to compromise my current progress.

    • Zapamania
      Zapamania frances20411

      Posted

      Hi Frances I hope your diet change works for you.  Please keep us posted on your results.  Good luck. Zap
    • lijuan7002
      lijuan7002 Zapamania

      Posted

      Hi Zapamania,

      Yes! You are right! The pegylated interferon can reverse some gene mutations(JAK2).

      I think the new generation pegylated-interferon may a good choice for a permanent cure !!

       Best wishes

    • Zapamania
      Zapamania lijuan7002

      Posted

      Hi lijuan I'm assuming you've done some research on pegylated interferon.  I have also and I think we've both come to the conclusion that it may be the best choice for reversing some of the damage.  Are you on it?  If so, what is your dosage and how often do you inject it?  I'm going to the Drs today and have quite a few questions about it.  I'll let you know what he says.  Zap

    • frances20411
      frances20411 lijuan7002

      Posted

      Have you taken the pegylated interferon??? and what is the out come???

      Why haven't the phycian community announced the info???

      If you have taken it for how long???  Any side effects???  Thank you

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