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Polycythemia

I'm RandyB, and I support someone with cancer

My wife has been diagnosed with polycythemia. She has to have blood taken once a month. She is also very anemic which causes her to have to get transfusions sometimes. She is very frustrated and looking for more answers. At her last visit her wbc count was over 15,000. Any help appreciated.

  • Post #1
  • Sun Aug 29, 2021
I'm Ginger, and I'm a healthcare professional

I was too for 11 years. If you follow the Mayo Clinic, it is now called Genetic Hemochromatosis. I am a LPN, and I knew, I wasn’t getting the care I thought I needed. I changed Primary Care, she sent me to an Epidemiologist, and the first procedure was a bone marrow aspiration. That was the key to all the issues going on.

  • Post #2
  • Sun Sep 12, 2021
Hi, I'm Libby

Ginger, I too have recently been diagnosed with polycythemia. Just this month they tested my bone marrow. I was told depending on those results will determine if a bone marrow test will be needed. My first question is what is involved for that test? The other that I keep forgetting to ask the doctor is, what does secondary polycythemia? I hope its ok to ask these types of questions.
Thanks

  • Post #3
  • Mon Sep 13, 2021
I'm Ginger, and I'm a healthcare professional

This diagnosis is strange. I have been following the Mayo Clinic on their new and revised study for 11 years. The thing with Polycythemia, is you don’t won’t take off blood if your Ferratin is low. No matter what your Hemoglobin and Hematocrit is, is now called iron overload. The reason for the bone marrow, is to find out if it is genetic, and if you have 1-2 variants of the gene. It is genetically inherited from generations. On my own research, I found out that the gene is prominent in European Caucasian descent. The gene is take from 3 generations back. According to my DNA, it dates back 800 years. A little creepy to me, even though I have been in the Healthcare Field for numberous of years. I don’t wait on the Physician’s, I like my own research on Pharmacy Companies, to the manufacturing, to the Mayo, and John Hopkins. Duke University also participates in numeours trial studies. During the Covid many hospitals are not during trial studies at this time.

  • Post #4
  • Tue Sep 14, 2021
Hi, I'm Joy C.

I highly recommend joining the Polycythemia Vera support group on Facebook, admin is Steven Taylor. I have PV and have learned more from this group than in my last 8 years with PV, and I’m an oncology nurse!! Because of this group, I now have an MPN specialist from Mayo and have switched to Pegasys in an attempt to get a cellular remission.

  • Post #5
  • Wed Sep 22, 2021
Hi, I'm Margaret

i too have PV and its been 15 years i am now on a drug called Jakafi and is under control with its use…Its so hard sometimes when you first find out about this weird PV but as the years have gone on i have along with my wonderful dr have learned so much about how best to control it,..good luck to you but i learned along time ago that to be just patient and listen to my dr and not to read so much about the pv..Why ?sometimes its scary and sometimes its best just to accept that you have this. its been tough but im tougher….

  • Post #6
  • Sun Sep 26, 2021
Hi, I'm KEVIN A N.

Yes – we read the Bible. Romans 8:28 says it all… And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
God did not give us the disease, he gave us the means to handle it and overcome it by health or by death. ”There but for the grace of God go I”, is the mantra of most all cancer patients I know.

  • Post #7
  • Tue Sep 28, 2021
I'm Ginger, and I'm a healthcare professional

I read & study as much as I can. Research is fascinating. It helps me with my continuing education to renew my license. It also helps me get an advantage on getting my FNP license. I’m not thinking about death, I’m too busy taking care of a failing mother, a husband with end stage liver disease, and a son with High Functioning Autism, and Atonic Epilepsy. I pray the whole country everyday no matter what.

  • Post #8
  • Fri Oct 8, 2021

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