Essential Thrombocytosis symptoms

Our MPL driver is a stubborn old coot!

You are so right, it seems to take forever to find the dose that's not too high, not too low . . . . hang in there!

I am JAG2 negative, CALR type 1 mutation positive found now, and I believe MPL negative.

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have as many clotting incidents as people with JAK2. CALR patients also cannot progress to polycythemia vera.

But less is known about this mutation and how it affects overall health and longevity.

Hoping you can get some answers about the enlarged joints. Glad that is not painful for you.

Hi nohrt4me,

Thanks for posting. Yes, there are concerns still with only CALR mutation too I know. The data all seems so new to make predictions about it. I am still concerned about PMF and how O/H listed 15 year cumulative risk of transforming to acute leukemia (2%) or myelofibrosis(4%).
Would a bone marrow biopsy at this time be of help or give more information is my question?

I did ask her about alleles and she printed me my six page molecular genetics report. There were two other alterations listed that I have never heard of under title of “variant interpretation summary for pathogenic bio markers”. I see the CALR -p.L367Tfs*46 on it and two others.

There is still much to try to learn!

Have a blessed day!

In 2004, I was diagnosed with Essential Thrombocythemia (ET) at the age of 32. This diagnosis came after being referred to an oncologist/hematologist due to a high platelet count. At that time, I was informed there was no cure for ET, and the only available medications carried a risk of potentially leading to leukemia. My platelet count was notably high at 1000.

Given the lack of effective treatment options and the associated risks, I decided to manage my condition without medication. Fast forward 21 years, and my current physician reached out regarding my recent bloodwork. She indicated that my platelet count was elevated, it was now at 517. I found this improvement encouraging, especially considering my earlier count exceeded 1000.

After discussing my results with my doctor, I expressed an interest in researching natural remedies for reducing platelet levels rather than consulting an oncologist at this time.

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?

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!

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.

I believe that in 2004, the only way to diagnose ET was with a bone marrow biopsy. That's about the time my dad was diagnosed.

I wonder if you might have been misdiagnosed and actually had secondary thrombocytosis? Maybe a spontaneous remission? Unexplained things can happen. Hope your doc learns from your case in ways that will help all of us!

There is an inflammatory component to ET that diet and exercise can address. It doesn't reduce platelets for any patients I know, but it can help a lot with symptoms and reduce overall clot risk.

Sadly, there are many individuals and clinics out there claiming to cure all types of cancers with "natural" treatments, which turn out to be massive doses of vitamins or supplements (so not exactly "natural") that are very expensive and don't work.

I tried CBD oil for 8 weeks for sleeplessness when that was the big craze. Told GP I was doing it. She gave me tips. I researched it, purchased from a reputable compounding pharma with third-party testing. Gave myself the recommended dose. Ended up with acid reflux and still couldn't sleep. Doc said she wasn't surprised.

Hi jane mc,
Thanks for your post. Please list the website you found that information on as it sounds very interesting. I do agree the doctors have limited knowledge about us. I have never smoked and know that is terrible for health. I eat healthy foods already and do Mediterranean diet. I plan to keep on living my active busy life well like I always have and learning as much as I can about what I have.
Enjoy your day!