Polycymia Vera

I need Info about this.
I can't seem to find Info that will help or that I can do for myself.

Hi, my name is Madelon. I think you mean Polycythaemia (Rubra) Vera.
I was diagnosed with this condition in July 1983 and as you can see I'm still here. It is a cousin to Leukemia (easiest way to describe it) and involves one or more blood lines eg red and white blood cells and platelets. In my case it was all 3 but more specifically platelets. My platelet count was astronomical. It was first treated with radio-active phosphorus but this did not work very well, so after a period of venisections the doctors put me onto a chemotherapy drug called Hydroxy Urea (common name Hydrea). This worked well until my disease went into the next phase ie. Myelofibrosis. It may sound funny but you can learn to live with it. Good luck with your search.

Hi, my name is Madelon. I think you mean Polycythaemia (Rubra) Vera.
I was diagnosed with this condition in July 1983 and as you can see I'm still here. It is a cousin to Leukemia (easiest way to describe it) and involves one or more blood lines eg red and white blood cells and platelets. In my case it was all 3 but more specifically platelets. My platelet count was astronomical. It was first treated with radio-active phosphorus but this did not work very well, so after a period of venisections the doctors put me onto a chemotherapy drug called Hydroxy Urea (common name Hydrea). This worked well until my disease went into the next phase ie. Myelofibrosis. It may sound funny but you can learn to live with it. Good luck with your search.

I only know what I've been told Madlen, But it's not easy to get answers.
I know I was told it was Polycythemia Vera, Now who am I to argue.
I didn't even know any thing like this exsisted untill I was told.
As for any kind of Kemo, Forget it, I'll just have to die. I don't believe in it nor do I trust any of it.

 

On 11/28/2006 Genes wrote:

I only know what I've been told Madlen, But it's not easy to get answers. I know I was told it was Polycythemia Vera, Now who am I to argue. I didn't even know any thing like this exsisted untill I was told. As for any kind of Kemo, Forget it, I'll just have to die. I don't believe in it nor do I trust any of it.

 

I'm sorry to reply to this message so late.

My father passed on in August from Myelofibrosis.  He was 70 years old and a week away from his 50th wedding anniversary.

This diease drove me into more medical libraries than I wanted to count.  Below are some really good web sites that will help you understand what you are facing and the options available to you.  Where I don't know your personal situations or your blood counts, my best advice to you is to find a hematologist you can really spend time with and talk to.  One that WILL answer any of your questions.  Involve your family and friends.  Never be ashamed or afraid to ask for support in any form.

'Keep track of your blood work, start a notebook.  Keep up to date on clinical trials.  My father was a very active man.  He was diagnosed in January 2006 - kept working part time until June 2006 - and passed in August 2006.  Unfortunately his MDS was found late and his prognosis was grim.  Initially we were told there wasn't anything they could do.  They gave him 6-10 weeks.  After 2 weeks of research, we found a wonderful hematologist and many different options.  I took a leave of absence to be my dad's caregiver - I work in the medical field - and as hard as it was to be both a daughter and the primary caregiver - I wouldn't trade that time for anything.

Research your options, decide what is BEST for YOU.  We turned my fathers 6-10 weeks into 8 months and they were QUALITY months not QUANTITY.  There are now some amazing results with just Thalomide now.  But the choice will have to be made ONLY by you.  Please make that an educated choice.  You OWE it to YOURSELF.

www.aamds.org

The National Cancer Institute

www.mpdfoundation.com

For Labs:

http://web2.airmail.net/uthman/lab_test.html

(Ed Uthmans home page)

For more in depth medical reading:

Pathology Outlines.com

Medscape

The American Society of Hematology

emedicine's article on Myelodysplastic Syndrome (July 2006)

The New England Journal of Medicine

Hill health.com

the Massachusetts Medical Society - Coping with Ineffective Hematopoises

The University of Rochester Cancer Center

Before long you'll have more information that will sometimes leave you with yet more questions - and that - is what a good, decent and dedicated doctor will have no problem answering those for you.

I'll keep you in my thoughts and prayers.  It's a tough road.  Try  not to let it consume your thoughts and days.  Stay informed, find a good doctor, but continue having a life for yourself. 

RadiationRuth

 

I'm curious to hear how you handled the Hydrea? I've been on Agrylin for about 2 yrs. and it's decision time for a new treatment. I've been through interferon in the past and that was no picnic. Now my Dr. is suggesting Hydrea but I'm concerned about possible long term effects and Leukimia. Sorry to get personal but how did you tolerate it?

 

On 1/8/2007 Jerryj wrote:

I'm curious to hear how you handled the Hydrea? I've been on Agrylin for about 2 yrs. and it's decision time for a new treatment. I've been through interferon in the past and that was no picnic. Now my Dr. is suggesting Hydrea but I'm concerned about possible long term effects and Leukimia. Sorry to get personal but how did you tolerate it?

After we found out that my husband had PV he was placed on Agrylin and blood thinners.  After a few years of being on Agrylin his Dr. switched him to Hydrea beacuase the Agrylin was not working as well to control his platelet count.  He also said that new research found the Hydrea was better of PV the the Agrylin.  He handled the Hydrea pretty well with little side effects.  He is now off of the blood thinners becuase he has two strokes and a small brain bleed. His counts have been doing well and he has been off of the Hydrea for about a year.  His blood counts dropped and he had to have a transfusion, the Dr.'s are not sure if this was from the Hydrea or if he has started the spent phase of PV.

 Good Luck to you.

Ginia