Is Essential Thrombocythemia a blood disease or cancer?

@gigi05
My oncologist/hemo also told me it is not hereditary and I was not born with it. I took him to mean ET but he could have meant the gene mutation. I am JAK2 positive and was diagnosed with ET in April at age 77 with a platelet count of 581k. Was put on a low dose aspirin a day and told I'd have to go on a chemo pill (presumably HU) if it went above 600k, but at the last check it had, for some unknown reason, gone down a little to the 540s. That's the only time it's ever gone down since it started rising a couple of years ago.

I also wonder why the question about alternatives to HU. From the considerable reading I've done about ET, HU is the standard protocol for treating it and seems to be the treatment that is better tolerated by most people and has the fewest unwanted side effects, for most people.

Thank you for sharing what you learn and prayers and best wishes for a good outcome.

@luvs2dance
My oncologist/hemo says he prefers to call them blood disorders rather than blood cancers. I was diagnosed with ET in April with a JAK 2 mutation, but no HU yet and no symptoms.

@1pearl
As someone else posted earlier, having low blood pressure and healthy habits doesn't keep the overabundance of platelets from sticking together and forming clots that can cause strokes and heart attacks. My BP is almost exactly what yours is but I still have to take a low dose aspirin daily to make my platelets less sticky so they don't form clots as easily. Blood clots are the greatest immediate risk of ET because they can be life threatening or fatal. Platelets are the cells that enable our blood to clot so too many of them can be dangerous.

My doctor told me this and I've also read it in many articles. If your doctor isn't sure what you have I would suggest you consider getting a second opinion and asking your doctor some questions.

Of course everyone should make their own decisions but we all need to have a good knowledge base in order to do that. God bless you and best wishes for a good outcome.

@1pearl
I had not seen this reply when I made mine. I see mine was not needed! Please excuse the duplication.

@cec2
No worries. Thank you for your concern. I do take low dose aspirin because I still have high platelets. I still have normal BP too which I measure myself each morning at home five days per week. Still I am blessed to have no symptoms and am very thankful to God for that. I am trying to find a different Medicare Advantage Plan for 2026 but do not know which one would be best for me. I am disappointed with the one I chose when I turned 65.

Hi from everything I have heard a regular supplement is best it cost more so that would be for you to decide. Can give you example for the year I. have had. May 2025 blood work from oncology showed Jake2 . Dr sent me for the Bone marrow biopsy that procedure was $20,00 outpatient services. Does not include Dr and tests. End of May had AFIB 4 days in the hospital that was over $10,000 . Have had blood work starting at every week , then 2 weeks ,every month now next appointment for 2 months. All this plus B12 injections x5 weeks. I have spent maybe $500 but had other Dr appointments figured in with that . My supplement is $166.15 a month now the deductible was $257 I have not paid for anything for medical visits. Including my cardio visits. Hope this gives you some ideas.

@cec2
Hello,
Thank you for posting.
Sorry to hear about your diagnosis.

The gene mutation -JAK2 -causes the high or higher platelets. This gene mutation is not a mutation that is directly inherited or acquired at birth. It happens later in life for reasons not clearly understood at this time.

Platelets can go up and down a bit. They can also remain stable at the level they are. So, they are not guaranteed to go up. Mine have gone down a bit in the past year.

You are right about the standard protocol. Aspirin to prevent clotting and the resulting issues, and HU to control platelets if levels get too high. Some people, like myself, are very interested in natural and organic ways to heal, especially since HU is a chemotherapy drug, albeit one that can be taken by mouth, and is generally well-tolerated. For me, this is not an either or situation, but more, what can I learn here, and what else can be done, as I want to be as healthy as possible. And with high platelets, definitely heed your doc's advice. You don't want to have a stroke, or heart problems, etc.
If you have any questions, let me know.

@vickieannb57
Thank you for your information. Honestly, I would like to have another opinion out of the Medicare Advantage Plan I chose and have not done that. My O/H thought I had ET in January 2025 with CALR1 mutation but she changed it to primary myelofibrosis in February 2025 after I requested a bone marrow biopsy she said I did not need. I think that is why she changed my diagnosis. I did not pay anything for it as no copay. Then she sent me for pelvic CT and that came back with no enlarged spleen. I did not pay anything for that either as no copay. She sent me to bone marrow transplant specialist and he said no transplant needed now and may never need one or at least not for a long time. I did not pay anything for that either as no copay. He said there is no age restriction for bone marrow transplant if one is fit and healthy so I should stay that way like I am now. Currently I do take daily low dose aspirin only as on labs my platelets are high, red cells normal, and white cells only slightly high. I have no symptoms. I do daily exercise and eat well and am good weight at 106 for my height of 5 foot 2.5 inches. If I truly have myelofibrosis and develop symptoms, I would need to take meds that are costly. I would receive astronomical bills from my Advantage Plan if I needed to take those meds I know. Since it is possible that I might need to take them in the future, I agree that it would be good idea for me to change from what I have. I am just not sure what to change to still! When I signed up for Medicare when I turned 65 last year, I was very healthy and still feel like I am but I do have high platelets. Thanks for listening.

@gigi05
Thank you for your reply. That's what my oncologist told me as well.

Of course we all want to be as healthy as possible. I'm all for natural. I don't like to take any meds unless absolutely necessary (which sometimes they are). As far as I know, I've only ever taken two Tylenol tablets in my life, and those were on different days. If I have a cold I take nothing for it, as I think it will be better in a week or so with or without meds. I even think a fever, unless it gets dangerously high, helps our bodies fight infection.

I don't want to have to take HU, but if my doctor advises it, I will (presuming I can tolerate it), because I certainly don't want a stroke or heart attack. I'm taking the low-dose coated aspirin at present.

From what my doctors have told me and from what I've read, I'm not sure there is any natural remedy for ET, though, when the platelet count gets into the danger zone. I wish there was. Of course healthy habits are just as important for us as for those who don't have ET. I don't think anyone would disagree on that!

Best wishes to you for good health and God bless.

@1pearl

My Medicare Advantage plan is one through my former employment and is a state plan. So far I've been satisfied with it, but I've not had any hospitalizations and I'm not on any expensive meds. I don't know much about the plans offered to individuals, other than they vary a LOT and also vary by location. The drug coverage probably varies a lot, too. The Medicare Supplement plans used to be standardized as to benefits but not price, but I don't know if they still are. (My husband was on one but he passed away in 2012.)

I wish I knew what plan to suggest but I don't have a clue. Perhaps there are resources available to provide guidance? That might be worth checking on.

Best wishes and prayers for you.