Polycythemia Vera- need help

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Marty - 24 Jan 2008 13:14 GMT

HI,
HAPPY NEW YEAR!!! THANK YOU SO MUCH FOR TRYING TO HELP US.

My father is a 61y.o man with a myeloproliferative disorder (MPD):
Polycythemia Vera. He was diagnosed in 2003. He has a hypercellular
bone marrow and normal karyotypes. Additionally, he has BPH and
bronchial asthma. Currently on :
Agrylin 0.5mg three times daily
allopurinol 300mg daily
flomax 0.4mg daily
amox/ clav antibiotic 875mg daily for prostate infection
serevent inhaler 50mcg daily
aerobid 7g inhaler daily
aspirin 81mg daily

LABS:
WBC 11,800/MM
RBC 7.42
Hgb 12.4 g%
Hct 40.6%
MCV 54.8
MCH 16.7
Plt 900/mm
Differential distribution: Neutrophil 80. Slight variation in size and
shape.

Currently, he feels well and exercises five days a week.

JAK-2 gene mutation positive

His hematologist recommends that he start interferon 1 million units
thrice weekly x 10.

The patient found some sites on the web that "guarantee treatment/cure"
for PV:

http://pv-tab.com/about_tab.html?gclid=CJHR9bbL1ZACFQQjPAodAWZwXA

http://www.hnmrc.net/pd225073780.html?categoryId=0

http://www.veritin.com/about.htm?gclid=CMrQ94_M1ZACFQiaPAod4lXfYg

Do you know anyone who used any of the above or any other "Alternative"
method with any success for any of his ailments? I have a pharmacy
degree but would prefer keeping meds to a minimum due to side effects
(constantly weighing risk/benefit ratio). I would like some advice as to
effective and safe natural alternatives to any of the above meds (and
diagnosis) including interferon, inhalers, flomax, etc.
Also, any opinions and tips are appreciated.

He is also scheduled to go for the Prolieve System treatment (aka
transurethral microwave therapy) for shrinking the prostate in a week.
What are your thoughts about this procedure?

Thank you in advance for any information or leads.

Lana
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Jeff - 24 Jan 2008 15:19 GMT

> HI,
> HAPPY NEW YEAR!!! THANK YOU SO MUCH FOR TRYING TO HELP US.
[quoted text clipped - 42 lines]
> degree but would prefer keeping meds to a minimum due to side effects
> (constantly weighing risk/benefit ratio).

I am not sure why you have the word "but" in the above sentence. Having
a pharmacy degree doesn't mean you want to give more meds than necessary.

I looked at the site for the PV tabs. I didn't see any clinical trials
of the stuff. No evidence that it works.

The guarantee is a 120-day money back guarantee. There is no guarantee
that the stuff will work.

Basically, the proper word for those treatments is "conjecture-based"
medicine, not alternative or evidence-based. The shortened form,
"con-med" is also appropriate. Alternative treatments are not proven.
The term "complementary medicine" is a marketing term, not one that
indicates proven efficiency.

Do you really want to trust your father's life or his money to these
treatments you found on the internet? I don't think so.

My advice to you is to go to www.quackwatch.org and learn about the
pitfalls of alternative treatments, go to cancer.gov and learn about
polycytemia vera, and read up on the treatments and JAK2 mutations at
pubmed.gov and scholar.google.com.

Your dad has a serious condition. Don't be afraid to get a second
opinion at a cancer center. There are many excellent cancer centers in
most areas of the US, usually affiliated with a major hopsital, like the
Mayo clinic or a major university, like Penn, Harvard, Yale, Michigan or
Stanford,

You should be afraid to waste your time, effort and money on unproven
con-med (alternative medicine) treatments.

Jeff

> I would like some advice as to
> effective and safe natural alternatives to any of the above meds (and
[quoted text clipped - 10 lines]
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J - 25 Jan 2008 00:02 GMT

> My father is a 61y.o man with a myeloproliferative disorder (MPD):
> Polycythemia Vera. He was diagnosed in 2003. He has a hypercellular
[quoted text clipped - 48 lines]
>
> Thank you in advance for any information or leads.

There's over 2700 people on the ACOR MPD list here
http://www.acor.org/mlists/mlists.html#m
Click on it and join.
Why re-invent the wheel? They've probably heard of everything you're asking about or might
ask about.
J

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reachdavid - 26 Aug 2008 16:51 GMT

Hi Marty,

What is the prognasis for your dad. Did u find any alternate medicine.

David

>HI,
>HAPPY NEW YEAR!!! THANK YOU SO MUCH FOR TRYING TO HELP US.
[quoted text clipped - 55 lines]
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