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poly vera and acute leukemia

Posted by @donamphisfamily in Cancer, Jan 27, 2012

My sister just turned 72. She has had poly vera for a few years, and it has been controlled well. She also had breast cancer, stage 0 it was caught so early.
all of a sudden her white blood cell count is 14, and platelets went from 99 to 61.
and they are saying she has acute leukemia! I can't believe it. They are taking some other blood tests, she is on medication, and see if the numbers change.
Does anyone have any experience in this?? I don't understand why there are never any replies to these questions either.

Tags: Cancer


Posted by @fernbanks, Feb 25, 2012

As an almost 1-year survivor of acute myeloid leukemia, I know that my disease is often the result of previous cancer treatments. This is not the case in my situation however. Your age and over-all health factor in with how well response to treatment will be. Treatment was not so bad but, I think my age (less than 60) and general good health helped me tremendously.


Posted by @donamphisfamily, Feb 25, 2012

Thanks for writing I really appreciate it. Mayo;s treatment was to withdraw majority of white blood cells, and replace with new good ones. but the first treatment just about killed her. I think it is starting to hit me, she is really gone, I am feeling really sad today. she was in excellent health, they said being a little older, was a factor. cancer is a demon itself. I feel so sad and angry all at once. I am so glad for you though, that you have come through this, I hope and pray for you, a nice long happy healthy life...........Barbie


Posted by @fernbanks, Feb 26, 2012

Barbie, I thank you for your kind words. I too will pray for comfort, strength and peace for your family. ~ Phyllis


Posted by @donamphisfamily, May 11, 2012

Well it is almost 3 mo. now since my sister has passed. I am still very angry.
when she developed a "pin" size cancer cell in her breast, it didn't even register as a stage. Yet they had her take 33 radiation treatments, and I am positive that is what threw the poly vera all out of whack. Also, after her mammogram, she got a letter saying she didn't have cancer, then the next day, they called, and said oooops, we made a ittle mistake, you do have breast cancer. I am so angry that I didn't think to take her for a second opinion. So how do we know if she even had breast cancer in the first place, and all the stupid radiation was for nothing!!.and actually activated the poly vera into AML. They originally told us, only one person out of 100,000 with PV,will it turn into AML I feel the medical system failed us, and after the mistake was made, they were trying to cover there butts, at the expense of my otherwise, perfectly healthy sister. I still think it's all about money, and how many other women are going to lose their lives because of this. Ladies, get a second and third opinion, before you start any drastic treatments, you could be saving your own life. Oh, and one more thing, we were very "unhappy" with the experience at the Mayo Clinic, in Minnesota. First they said they had a clinical trial she could try, they drove all the way down there, to be told, oh, guess this isn't a trial for you.The next day, they called, and said, oh we have one now, so back they drove to Mayo, with my sister barely alive. They did the treatment late that night, without notifying any of us, for 4 hrs. we didn't find out till the next morning. And that treatment, draining all the white blood cells, was a total waste of time, and just made her detereate that much faster. As you can tell, I am still very upset. Her angry and upset grieving sister2012


Posted by @jennyo, Oct 28, 2013

i have poly vera also for about 2-3 yrs. they were doing routine phelbotomys but my doctor retired and the replacement dr. does not seem interested in doing anything . hemoglobin is now 51 plus....I was interested in what advice, treatments, things NOT to do etc. thank you and I am so sorry for your loss

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