High levels but going on vacation

Hi! Paul:  I was replying to another patient when I noted your info.  I have a question; Are you also on hydroxyurea??? and what is you platelet number???  I have personally had PV for 3 years and only do phlybotomy and not the med hydroxyurea...I don't like the side effects of that med.  Would appreciate an answer.  Thank you.

Hi Frances - not even sure what hydroyurea is !!

l have a 3 monthly phlybotomy and a daily aspirin and a special tablet if l fly long distances to prevent DVT's.

All good apart from that.

Thank you for the reply.  Hydroxyurea is a Chemo type med used in America...has to be handled with gloves and the side effects are somewhat like infused chemo.  I won't take it.  My HCT hovers around 44 and at present I am having weekly phlybotomies to keep it there.  I  was as high as 56HCT... plus a daily baby aspirin.  I have had DVT and was on Xarelto once.  I feel good and the only symptom are red palms of the hands.  PV is just a frustrating disease.  I have come through 2 other cancers (not breast) and in remission from both.  Caught both in stage 1.

Paul I would like to add that my parents are from England..I was born USA.

Thanks for the info on Hydroxyurea- hope l never need to take it.

My HCT hovers in the high 40's but has gone into the mid 50's.

l had a DVT 5 years ago as a result of snapping my achilles tendon playing basketball. The PRV would have helped developing the DVT. That was some ordeal as the DVT got into my lungs..

I'm an Australian.

 

Hi! Men can have a higher HCT...I am glad that you came through the DVT in the lung...that is really serious.  You never answered what are your platelets number since phlebotomies do NOT touch the number or platelts and platelets are what clots your blood.. Aspirin has some effect on clots..I don't think a great deal.  Also I forgot to mention that I also drink a lot of water @60 plus ozs.  Is water part of you routine???   Thanks

Sorry France's, I missed your post. I don't know what my platelet count is. I'm guessing it is are okay as it hasn't been a discussion topic when talking to my haematologist. I try to drink plenty of water just because it cleanses your organs, not specifically as part of a PRV regime..

Platelet number (PIT) should never be over 700.  A scientist told me that PIT numbers can go high due to lack of iron.  I know many state Not to take Iron but i do (time release type) once a week (doctor's orders)..and it keeps the PIT down in the 500 level.  I have had DVT in the leg prior.  I do NOT eat any red meat, take a baby aspirin, walk and drink 50/60 oz. water daily. My HCT number is below 44 since I StOPPED EATING RED MEAT. Cannot explain why this effects it.  Water also helps circulation besides organ cleansing.  I have weekly lab work to keep a close ck. on my numbers and ONLY if my HCT is 44 or over do I have a phlebotom.

I live in America.   Good Luck!

Red meat has a lot of iron in it. It's like anything you do, have some in moderation.

just checked my recent blood tests. My platelet count is 252. Normal range is between 150 to 400. 

I was told early days of my PRV diagnosis to not take iron supplements but to have a normal diet which would provide the required level of iron the body needs. I do eat red meat but again maybe twice a week.

 

H Paul, I just came across this message when doing general research about PV. Im 42 and was recently diagnosed (in april this year) so still learning. I just noticed you say you take a special tablet when flying long distance. Could you please tell me what kind of table that is? I love travelling and often fly long distance, but since diagnosed ive felt trapped as the doctor told me the only option was to take shots and bring with me syringes...but I often travel in places where I cant keep the syringes in a safe and cool place, so a tablet would e A LOT more convenient. I hope you have time to answer. Thank you

PS. I meant to write tablet (of course) :o

Hi. Only to happy to assist.

The tablet is called Xarelto. They give you 24 hour coverage which will get you most places in the world, even from Australia ! You can only get them on prescription here. Much better than getting jabbed in the stomach by my wife !!

My haematologist says that you are probably ok flying without anything for around 4 to 5 hours but to use the compression socks as a precaution.

Hope this helps.

cheers

Paul

Ahh thanx a lot for that info Paul Tablets is a lot better! And much easier to bring along. And yes I heard that 4-5 hours is the limit without any tablets.

- Pia