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Essential Thrombocytosis symptoms
Blood Cancers & Disorders | Last Active: Feb 13 1:02am | Replies (170)Comment receiving replies
Hi micheletx ,
What you posted is very interesting. How did you manage your condition and get your platelets down to 517 with no meds? You are younger than I, but I am very hesitant to take Hydrea and still have not filled the Rx as I only learned I had this high platelet problem from a primary care visit with blood work onDecember 11, 2024. By January 10, 2025 I had an oncology/ hematologist prescribing me twice per day Hydrea 500mg for life! I did not fill it and went home to have a quick course on all this and was grateful to have found this group as it has given wonderful insight. I have done genetic testing and have CALR mutation only with no symptoms. I am doing a bone marrow biopsy in two days. Like you, I do not like knowing the treatment ultimately may cause leukemia. I would really like to find another alternative and manage my platelets myself. Mine did go down on their own 362 which is a large amount in about four weeks I thought. I would think another measurement of platelets would be appropriate before starting any Hydrea in my case. I know this is a slow cancer so no rush before knowing what is going on I feel. You are fortunate to be a bit more than ten years younger than I am, so I learned age is some huge risk factor which I really do not agree with personally, but that is how doctor view it.
Thanks for posting and sharing how you lowered your platelets so much on your own as mine would be just fine if I could manage to do that. Do you know how long it took for you to lower them to that great level?
Replies to "Hi micheletx , What you posted is very interesting. How did you manage your condition and..."
Hello 1pearl,
In an effort to identify the cause of my platelet reduction, I have been considering various factors. The most plausible explanation I can discern is the alterations in my diet and lifestyle. I have adopted the Mediterranean diet lifestyle, which emphasizes the consumption of vegetables, fruits, and whole grains. Additionally, I have restricted my intake of red meats to once a week.
I have read numerous comments suggesting that it is not possible to lower platelet counts without medication. Therefore, I am uncertain how I have managed to reduce mine.
I wish you the best of luck in your journey.
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1pearl, wishing you well with your bone marrow biopsy. Learning more about your condition is so important.
I feel the worse part of ET is the lack of information. Nobody fully understands this cancer. Layer on our doctors' inexperience because ET is so rare, and it gets really frustrating.
Regarding the possible progression to myelofibrosis (MR): this is part of having ET, not a side effect of taking HU. The vast majority of ETrs do NOT develop MF. But some do.
I've stumbled on an interesting Lancet article from January 2024. The study was, what factors play into progression from ET to MF? The purpose was to create a tool that would help identify those most at risk.
I'm no statistician, so much of this was way over my head. But one paragraph really jumped out at me.
"ET is a chronic haematological disorder that often has minimal impact on the overall quality of life. As a result, patients may underestimate the importance of regular follow-up and may be hesitant to undergo bone marrow examinations. Performing risk assessments during the initial diagnosis helps identify patients who require close monitoring, appropriate counselling, intensified follow-up, and regular evaluation, particularly those at high risk. This approach allows for prompt adjustments to treatment strategies, which play a crucial role in slowing disease progression and prolonging patient survival."
So, learning as much as you can about your individual situation is the best way forward.
By the way, the study found ET patients who smoke have a higher probability of progressing to MF. Another great reason to stop smoking!