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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Mar 20 8:31am | Replies (392)
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@raremiracle2

Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but;
Hospitalized same number 2022; 3x-4x higher (Doctors blame septic but same numbers 2022; needed to find answers) After bone marrow biopsy: Myelofribrosis / Myelofibrosis is considered to be a chronic leukemia. ((Doctor / Mayo Clinic - several websites) I've always had overload iron and first time low iron MVC + 72 (normal is 80-100)) Anemic. I've been screaming in pain when I over do it 2 hours after working- It's weird but I have bone pain and several other symptoms. I'm so excited to have you write and have more information. Wish I could go to Mayo Clinic, but insurance pays for Blood Cancer Clinic in Ocala, Florida. Several rare diagnosis

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Replies to "Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but; Hospitalized same..."
Lori, Volunteer Mentor | @loribmt | Jan 12, 2023

Happy to help you find answers and offer some encouragement! I had AML, acute myeloid leukemia. Actually I was diagnosed just shy of 4 years ago. Can’t believe how quickly the time has sped past!
Several rounds of chemo got me to remission but because of the mutations which caused the AML, I needed a bone marrow transplant to prevent a relapse. I’m now 3 years 6 months post transplant in a durable remission!
Happy-dancing through life now. ☺️ It’s my pleasure to be able to encourage anyone else experiencing a blood cancer that you can get through this! It’s important to stay positive. Here’s my story:
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

Chronic myeloid leukemia can be very slow to progress, which is fortunate. It gives you time to find a good oncologist and get treatment options for your particular case.

You may have already read some of these articles but this is a fairly good one from Healthline.com. It explains CML and its symptoms. If you read down, you’ll read why CML can cause bone pain. The proliferation of white blood cells expand beyond the marrow and reach to the outer bone and joints.

https://www.healthline.com/health/cml/chronic-myeloid-leukemia-symptoms
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Another informational article worth mentioning was this diagram about how CML affects the body, again from Healthline.com

https://www.healthline.com/health/chronic-myeloid-leukemia/living-with-cml/effects-of

If you like to get a second opinion you’re always welcome to contact Mayo Clinic here: http://mayocl.in/1mtmR63

Are you currently receiving any treatment for the CML or are you in a watchful waiting window?

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