New to PV

0

I just went to an onc, He told me i could have polycythemia vera. Im kinda nervous about the whole thing cause for a second I thought i had leukemia. My levels were at 52 and they should be around 45. Im a 32 year old black male. Can anyone help me with what i should be thinking about at this point or what questions i should ask after my tests come back ? I go for my blood tests next week. Also, i dont have any of the symptoms. does that matter?

created Mar 06 '09

3 replies

0

Hey Drew- I was diagnosed with PV last year, and I am 34. There's =
nothing you you should or shouldn't be thinking- you're probably scared, =
but that's totally normal. Like you, I had no symptoms. Most people with =
PV lead very long, very normal lives. What happened with me is I had a =
lot of blood work done and a bone marrow biopsy done. They tested me for =
the JAK2 mutation (which I have). Now, I go in for monthly-ish =
phlebotomies and I take a baby asprin a day since I have elevated =
platelets.=20

I guess my only advice for you is make sure your doctor is knowledgeable =
in MPD's (myeloprolific disoeders). A really good website is =
www.mdpinfo.org. ANd ask your onc as many =
questions as possible- it's their job to keep you informed. Hope this =
helps.=20

--Shannon
PV, 2008
----- Original Message -----=20
From: =
drew1=20
To: mstscc@msn.com=20
Sent: Thursday, March 05, 2009 7:53 PM
Subject: [polycythemia-vera] New to PV

created Mar 06 '09
0

Shannon thank u so much for the info. I guess I really needed to hear something good. i guess the question i still have for you is are u having any symptoms now? since it has been a year.

created Mar 07 '09
0

I have no symptoms... not then, not now. The only time I ever felt bad =
is after I had my first phlebotomy (felt really weak and tired, but that =
went away after a day) and when I was on Hydrea. Most people do really =
well on Hydrea, and I probably could have stayed on it, but as young as =
I am, it wasn't the best option for me. Feel free to privatly email me =
too if you want.

--Shannon
----- Original Message -----=20
From: =
drew1=20
To: mstscc@msn.com=20
Sent: Friday, March 06, 2009 12:31 PM
Subject: Re: [polycythemia-vera] New to PV

created Mar 07 '09
Please login or register to reply.
Looking for more? Check out Leukemia (conditions) Polycythemia (conditions)

Statistics

  • In Polycythemia Vera
  • 257 views
  • 3 replies
  • Created over 5 years ago
  • Last Activity over 5 years ago

Tagged with:

Leukemia (conditions)
Polycythemia (conditions)

Question about Polycythemia Vera?

Ask question

Related Discussions


advertisement
advertisement
advertisement