← Return to Blood Cancer - JAK2 - Autoimmune- Confusion

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Good morning, @pinkflamingo. Your @name made me smile and think fondly of Florida this spring morning. We just got 13 inches of snow yesterday in northern Wisconsin so our winter in Florida seems like a hazy dream now. 😊

Oh golly, you are going through a horrible time right now and I’m so sorry you’re getting dismissive treatment from your hematology oncologist. The first red flag was when she said you’re simply too young to have a blood cancer or disorder! That can happen at any age from infancy through adulthood.

You clearly have something going on but it doesn’t necessarily mean you have a blood cancer. It is a really good idea to have that bone marrow biopsy/aspiration next week. While it sounds scary, please don’t fear this test because it is a vital tool to be able to see what’s going on in your bone marrow.

Bone marrow is the blood manufacturing site in your body. The biopsy will take a little core sample of your marrow and also peripheral blood from the same area. The tissue and blood are examined and tested very carefully by a number of different techniques which allows the technicians to determine the cell composition of red/white cells and platelets. This will also provide a picture of the overall health of the marrow and its capabilities for making healthy blood cells. The results can take a full week to return.

You’ve tested positive for the JAK2 mutation. I’m giving you some information below which explains what the mutation is and how it can interfere with the normal production of your blood products. JAK2 mutations can cause various bone marrow disorders. These are known as myeloproliferative neoplasms (MPNs), where the bone marrow produces too many blood cells. Some of the symptoms you have such as the enlarged spleen, itching, high platelets, etc., can be signs of MPN. It will be valuable to see the results of your biopsy. Because if there is something amiss, then you can start treatment to get you on the road to good health.


Is it possible for you to change hematologists such as going to a large teaching hospital institution such as Mayo Clinic? Here’s a link to the Mayo Clinic home page if you’d like to request a second opinion. http://mayocl.in/1mtmR63

I also want you to know, you’re not alone with any of this…you now gained a new family here on Connect. Many of us have or had similar symptoms such as itching, high and low red/white blood counts, excessive platelets, etc…and we are all different ages. We’re all willing to share our experiences and offer encouragement. So please, go ahead with that biopsy and let me know what you find out, ok?

With your platelet level running quite high at 600, that is risky for the potential for blood clotting and heavy bleeding. https://www.medicalnewstoday.com/articles/normal-platelet-count-by-age-chart#why-they-fluctuate
Have your doctors ever suggested being on a blood thinner or on low dose aspirin?

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Replies to "Good morning, @pinkflamingo. Your @name made me smile and think fondly of Florida this spring morning...."

Thank you for your thorough response, Lori!
I love flamingos, but am unfortunately in a northern state as well...thinking of warmer days!
I've tried the low dose aspirin on my own; it seemed to make the period spotting worse.

Those of us with the JAK2 mutation, who have also been diagnosed with a blood disorder or cancer, understand that even oncologists/hematologists are not always familiar with rare disorders/cancers and specialized second opinions are highly recommended.
Know that we are all here to support you, @pink flamingo.