Franne

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Hi! I have other complications besides Gall Bladder and one is I have PV

(polycythemia vera) wherein my system manufactures too much RBC and I am subject to deep vein Thrombosis and I fear surgery.  Any suggestions

I am not on the cancer drug Hydoxia just take daily baby aspirin and staying on a low iron diet e.g. no red meats etc.  Thank you for your help and suggestions or experience with same.

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  • Posted

    PV is  rare form of myeloproliferative disorder where your bonemarrow makes excessive RBCs and JAK2 protein. 

    You may want to read this. There maybe some medicines suggested: 

    https://patient.info/health/polycythaemia-vera-leaflet

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    • Posted

      THANK YOU Rocky 31676 for the Important and Helpfull Info.

      I am in my senior years and have low b/p, have never drank or smoke

      and my cholrstrol is excellent (below 200 etc). I take daily aspirin

      and in remission of 3 cancers..(each retested yearly).  I have had PV for almost 4/5 yrs and never took the Hydrox..although I have been on the fence several times.  Eat a vegan diet, drink a substanial amout of water and somewhat walk.  I have all my marbles (brain= wise..thanks

      be) and enjoy life.  I do tire earily (could be the age) but still am active

      in church and socialize with many.  I once was a concert pianist (locally)and a model earlier. I am a firm believer in religion and prayer  I am a peace with my illnesses...they all started in my late 70's.

      I suspect that you are in the medical field and a caring person.  I live

      in America/Calfiornia presently.  Thank you again..you have given me

      hope.  I have one question?? do you take Hydrox and if so what were

      you side effects and how long have you been on it and I assume that you also have PV (what is that background?)  Thank you again.

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    • Posted

      Nope.. i dont have PV.

      It's just i have a background in medical research. 

      How did you find out that you have PV ? Aspirin i believe will help because it has anti-clotting properties and therefore anti-thrombosis. 

      Are you in Northern CA ? 

      There is no drug , hydox...ia,  that i know of .... Can you spell it correctly ?

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    • Posted

      Background in medical research..personal or professional?? Had several

      severe nose bleed that required ER and cautherizing.  A lab test indicated

      high RBC, WHC and platelets.  I was referred to an onocologist.  I live in southern CA (San Diego) northern I guess you know as SF area..I have traveled extensively (all the states in USA and most of Europe and Africa) originally from New York state. Now you are finding one of my weakness (spelling) but here goes: hydroxyurea or hydroxcarbomide...

      What does your research reveal about the side effect of that drug??

      and are there any fatal outcomes???  Thank again.  Where do you live??

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    • Posted

      professional. 

      Hydroxyurea is used in sckle cell anemia, but also in PV, as it decreases the number of RBC made in the bone marrow. It is also a leukemia, cancer drug . 

      Side effects can include nausea, vomiting, loss of appetite, mouth sores, diarrhea, or constipation

      Do you get any darkening of skin, which can be another side effect. 

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    • Posted

      Wondering as you stated Hydrox decreases the number of RBC...what about the platelets number??? does it deal with that too???

      Again, where do you live??? USA or???  Thanks again.

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    • Posted

      Thank you Rockey 31676 for all the info that you forward.  I will

      reread it again today.. Many folks that enter this site are from the UK and

      their terminology is different than in the USA that is why I was wondering

        I am worried more about the platelets than the HCT which I presently have under control.  In passing I understand that  the platelets increase with every blood letting (phlebotomy).  Have you done any research just on platelets???  Thank you again.

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    • Posted

      Phlebotomy tests have no effect on platelets, but medications can have that effect sometimes.  

      Why are you worried about platelets? Has it increased or decreased lately or is not normal in count? 

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    • Posted

      Yes, I do have a concern about platelets.  They have been a problem before PV I had a couple of DVT and hospitalized briefly. The number runs

      under 700 USA measure which is obviously above normal.  I probably should drink more water (which I don't care much for) and walk more which I al so don't care much for but do.  Phletobomies do cause the platlet number to rise due to the lost of blood.  I still am resisting Hydrox

      becaise possible side effects.  I prefer letting the body take care of itself as much as possible..but will take meds if necessary.  Thank you for the

      concern. 

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