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Polycythemia Vera: Just been diagnosed

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

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@loribmt

Hi @raremiracle2 Welcome to Mayo Connect! This is a wonderfully supportive forum. It helps when you find others who are going along the same medical journey so you’re not feeling quite so alone.
There are a number of discussions with members who have Chronic Myeloid Leukemia who are very encouraging with their experiences with CML.

I did find a free educational course that’s offered through Mayo Clinic for CML patients. It’s very informational and I encourage you to follow along.

– Chronic Myeloid Leukemia Patient Education Series https://mccmscontent.mayo.edu/LSC/ChronicMyeloidLeukemiaPatientEducation/content/index.html#/

Here are a several of the conversations you might like to join. Don’t hesitate to pop into any discussion and tag a member by tying in their @name. That way they’ll get a notification.
Chronic Myeloid Leukemia
https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/

~~~
@ginlori0509 who was recently diagnosed with CML started this discussion. There are some good links in some of the replies.

Philadelphia chromosome: Anxiety awaiting diagnosis
https://connect.mayoclinic.org/discussion/anxiety-awaiting-diagnosis/
~~
I think this will be a really encouraging discussion with
@suzie71, who had been a CML survivor for over 20 years! You’ll also meet @babyjakejake @anglis @ericloomis and others who are on the same CML journey with you.

~I've had CML for 20 years and want to encourage others
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/

What are your symptoms and treatments for CML?

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Replies to "Hi @raremiracle2 Welcome to Mayo Connect! This is a wonderfully supportive forum. It helps when you..."

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