Reaching out to others about treatment options and results


I was diagnosed PV 1 ½ years ago when my platelets were 700 count. They stayed that way while I had 3 PB’s and fainted with last one. They since told me no more as I do not have calcium in my blood. I tried HU one pill a day for a couple of weeks. My platelets then went up to 10,000. So Dr. told me to take 2 pills a day. Two days later I got so sick, flu like symptoms with slight fever, but platelets dropped to 140. Because I got so sick the Dr. told me to stop HU. Then after 2 weeks said to start again with one pill. I did and that night went into terrible chills. I thought I would freeze to death, was nauseated and threw up. The next day I had a rash all over.

Now a different Dr. wants me to try HU again because he says it so much easier to take. I AM CONFUSED!!!
I was emotionally ready to start Interferon. My counts are all up again. I am 75 and wonder if I can do anything more naturally to get through the later years of my life.

In reading some of the posts, I had a few questions…
what does the term “spent phase” mean?

Also, I would love to hear back from anyone on either medication as it would help me to know more about what I might be in for. I’m waiting for a few more days before taking my first pill in hopes somebody could give me some insight before my treatment begins.

Thank you for your comments and time

I am only 43, as of March 12th, the year of our LORD 2009…=20
I retired from the military in 2003… I use to work on F-4 =
fighter/bomber (Phantoms) aircraft… one day I was working on one and =
got a rash all over… I went in to the base clinic and they told me to =
go back to my room in the dorms and take a good bath and wash my clothes =
real good… I did all that and the rash went away… however, from then =
on my blood pressure was always high and my HGB and HCT was high… so, =
I’m not certain what I was exposed to and no one will probably ever know =
but I find it an incredible co-incidence… the VA has given me credit =
for being a disabled vet because of that and a few other things…=20
This is what I’ve found so very interesting… I can’t figure out where =
it comes from… research says that not everybody gets it… and it is =
NOT passed from mother to child, but using tricky wording researchers =
state that it’s somehow activated after the birth of a child (I don’t =
understand that at all)… however, it DOES run in families… (My =
great-grandfather had it and donated blood very often) I’ve read that =
it’s most common in Ashkenazi Jews… however, no one whom I’ve =
corresponded with, besides myself, has ever acknowledged being anything =
near Jewish, German, or Northern African… so, that’s all pretty =
confusing to me…=20
I have a lot of questions also, and would like know what a spent phase =
I must also mention that I feel badly for your plight… I hope and =
pray that everything works out with your new doctor… =20
As far as treatment options go… I just give blood… I have a VA =
doctor (Not a very good PA) and oncology specialist (Indian)… they =
both tell me to donate blood… however, neither of them will give me a =
doctors order to give more often… so, I have to donate once every =
three months and my levels remain high… I’ve been trying to get them =
to let me give more often, but they won’t and they won’t give me a =
reason why…=20
I know that I haven’t answered your question… here’s what emedicine =
says about it…=20

The course of polycythemia vera may or may not follow several phases.

The plethoric phase usually occurs first and is characterized by =
hyperproliferation of cellular components. The principle manifestations =
during this phase are thrombosis and hemorrhage. As a consequence, =
treatment is aimed at ameliorating symptoms.

The plethoric phase can last for a few years to as many as 20 years.

After the plethoric phase, the spent phase is characterized by =
progressive anemia, fibrosis, and splenomegaly. Smears demonstrate =
findings of anemia, thrombocytosis, and leukocytosis. In contrast to the =
plethoric phase, patients in the spent phase are often transfusion =

I hope that you start feeling better and have fewer complications...
							=D7=A9=D7=9C=D7=95=D7=9D, =20

Love is very patient and kind, never jealous or envious, never boastful =
or proud, never haughty or selfish or rude. Love does not demand its own =
way. It is not irritable or touchy. It does not hold grudges and will =
hardly even notice when other do it wrong. It is never glad about =
injustice, but rejoiced whenever truth wins out. If you love someone you =
will be loyal to him no matter what the cost. You will always believe in =
him, always expect the best of him, and always stand your ground in =
defending him. All the special gifts and powers from God will someday =
come to an end, but love goes on forever. There are three things that =
remain-----faith, hope, and love-----and the greatest of these is LOVE. =
1 Corinthians 13:4 - 8, 13 The greatest … is LOVE

Greatest Website on Earth:
Daniel L. McGrew, AAS, BIT, MIT, A+, Network+ Certified =
30% Disabled Veteran
181 Lakeway Drive
St. Matthews, SC 29135
(512) 595-4059 =20

You can find my NEW book here:
If you work for the federal government it is a MUST read.

You can find my cousin Becky=E2=80=99s book by clicking here.
If you like sci-fi/fantasy then this is a MUST read.=20

Check out my NEW Bulletin Board - Government Out Of Control.
If you have a rare blood disease like ME, then visit my website and talk =
about it with others=E2=80=A6=20

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=EF=81=90 Please consider whether it is necessary to print this e-mail

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-----Original Message-----
From: Care Bear =
Sent: Tuesday, March 31, 2009 11:30 PM
Subject: [polycythemia-vera] Reaching out to others about treatment =
options and results…