Polycythemia Vera

S

say_sowhat

New member
Hello, im posting here because im very concerned about my mother. First off i would like to apologize if this is in the wrong section, im new to forums but couldn't find where to post this? Moving on, my mother is 44 Years old, english white. She lives a healthy life style, doesn't drink, doesn't smoke, etc. I was really surprised that she had been diagnosed with it, but thankfully there is treatment, will the illness affect her life expectancy? Her blood is thick, and needs to be thinned down, because it sticks to her body, today she has had 4 lots of paracetmol, trying to get rid of a headache she has had all day and it won't budge, she is going back to the doctor soon, she was told that she had an overactive bone marrow. Producing too many red blood cells i believe. Ive done research on this but was wondering any additional information people can tell me about it, she seems fine in herself but has been getting very tired where she's been having to have her blood thinned down and constant headaches. The doctor is aiming to get her blood level down to a certain amount, and then im not sure, would she still need treatment after that?

Thanks alot for your time and help
 
My mother passed away 2 years ago at the age of 72. I believe she had polycythemia vera for a long time but had never been diagnosed as such until the year before she passed away. She also had blood drawn every couple of weeks and had the incessant itching every time she showered.

The Anderson Cancer Center in Houston put her on some experimental drug which had to be injected into her belly once a week. She was on this for 6 months before she passed away. It did NOT help her. Instead, depression was a side effect and therefore she had to have anti-depressants and when they raised the mg of the anti-depressant, she became confused and disoriented. I can tell you more if you're interested. I'm not trying to discourage anyone. Maybe she would've done better if she were younger. She also never smoked or drank and was in pretty good health otherwise.

The best advice I can give anyone is if you have a loved one with this condition, tell them you love them and treat them as such. Cherish every moment with them because it's not how many days we live that matters as much as how we live each day. I was with my mother until she took her last breath, holding her hand. My daughter is starting a business and part of her profits will be designated towards the research for a cure for this disease. I have suffered from severe hives and the itching is almost unbearable, so I can only imagine what it's like to live with this every day!

If your family member is given any type of experimental medication, please keep a close eye on their moods and memory closely. Sometimes only people really close to the patient is able to see the differences or changes, and always report them back to the Dr or nurse and ask questions. Keep asking questions until you are satisfied you understand the answer.

Good luck.
 
Dear INResident,
Thank you so much for your heartfelt message. I'm so sorry about your mother. You are right. We must live each and every day to the fullest and cherish those we love.
I've never heard of the experimental treatment you wrote about, but thanks for alerting me. Right now I am just on a daily aspirin (81 mg.) and phebotomies. However, my platelet levels are rising, so I may have to go on Hydrea in the near future...It's a lifelong
ordeal from now on. Again, thanks for writing.
Plynn
 
Your mother sounds like me. I never drank or smoked and always led an active, healthy lifestyle...But I was just diagnosed with primary polycythemia vera this year. I also have been having blood drawn...with me, it's been every two weeks. Has your mom been diagnosed with primary or seconday polycythemia? Has she got the Jak2 mutation?
I tested positive for the Jak2 mutation, so that means I've got the primary PV.
This blood disorder can be managed/treated....but there is no cure. (yet!)
So, from now on, your mother and I have to be constantly monitored at regular intervals to make sure our blood counts are within the acceptable range.
Is your mother taking aspirin? My doctor has me take a baby aspirin every day, and so far, I've been having a phlebotomy every two weeks. I sincerely hope your mom gets some relief from her headaches...Have her talk to the doctor about this ASAP.
Don't worry about life expectancy...If she follows doctor's orders, and stays on top of her treatment, she should live as long as anyone else!
God Bless,
Plynn
 
Thank you for your advice, that's great too know she can live as long as everyone else as long as having it thined out and monitored, however she just told me it was PRV (Polycythemia Rubra Vera) Is this the same case?

Because i was very happy when i read that you said she'd be able to live a normal life and live as long as everyone else as long as she had it checked, however i get very scared when i read things like these that say the median survial rate is 9 to 13 years.

http://www.patient.co.uk/doctor/Polycythaemia-Rubra-Vera.htm

I'm also very scared because my mums aunt died of leukemia at a very young age.
 
Dear Plynn, I'm so sorry you have this condition. I didn't mean in any way to be negative. I looked up my emails to the Cancer Center. My mother was on Pegasys. Although it didn't work for her, maybe it will help others. The medication as I said was experimental and very expensive. In exchange for the medication, she agreed to let them take a biopsy of her bone marrow every six months. I hear this is very painful but my mother never complained.

Before my mother began the experimental drug, she also took aspirin every day and had blood drawn regularly. She finally tired of that and thought she'd try something else.

I pray that a cure will be discovered and I realize my mother was a pioneer in letting them use her to experiment with the drug. I'm fortunate that I had the time to say good-bye to her and tell her what a wonderful mother she was.

I check my email pretty regularly and hope someday to hear you are doing fine.
 
Yes, Polycythemia Rubra Vera is the same thing...We call it PV for short...
Please don't worry about what you read....It may have been an old entry, and as my daughter in law says, "You can't believe everything you read!"
Go to some of the other threads on this message board and read what some of the other pv-ers have written about their experiences. Read Megan's entries on "Polycythemia at 22-My story," and read Randy's, and all the other entries on that thread. The best thing is that you know you're not alone. Randy has had it since the year 2000! Ten years, and he just got a great report from his hematologist.
Does your mom have a good Hematologist? Does he have her on any medications?
Keep the faith, and God Bless You,
Plynn
 
I just read about Pegasys today! It's still in clinical trials, and it seems to be helping many people. I was reading from the MPDinfo.org website. Pegasys is a type of interferon. It said that 20-30% of the people who took it had to quit because of the side effects. They did mention that one of the side effects was depression. Others have had more favorable results.

Yes, the information gained from your mom's treatment has helped to lay the groundwork for a possible cure or an effective treatment for this blood disorder.
I'm sure I join many other PVers in thanking those, like your mom, who have gone before us in fighting this disease.

As far as I'm concerned, I'm at the regular phlebotomy and aspirin stage, and doing well.

Plynn
 
Hi, hope your mom gets helped with her PV. I have been diagnosed with it for a few months now. We can live a long lifw with this, as long as we get treatment. There is so far, no cure. I had phlebotomies (blood removal) at first, but my meds control the blood levels. I am on Hydroxurea, and allopurinol. The allopurinol protects me from side effects. I have a CBC (blood test) once per month, to make sure my blood levels are ok. I am lucky I live in Southern california, and have a great Hematologist/oncologist. I feel fine, and your mom can too, as long as she continues to get treatment. By the way, I do have pain in the left shoulder, and understand this comes with PV. sometimes it goes away. Hang in there,
Kierra
 
Im not sure, but she keeps having to have her blood thinned out until it is down to a certain level, im not sure what the next step would be.

Thank you alot.
 
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