I have ET a blood Cancer and I need advice.. Terry

I chose HU rather than having a stroke or heart attack. But of course you can choose your own path. Best of luck

I was diagnosed with ET last November and have been on HU ever since. It has brought my platelet count down from 792 to 203-206, with the only side effect was a headache off-and-on that subsided when my dosage was reduced. So many people facing this diagnosis are terrified at taking Hydroxyurea because is it a chemotherapy medication. I've read hear that some are afraid to even touch the capsule - if that was dangerous, I doubt the drug would be distributed in a way that allowed it to be handled. Anyway, please don't avoid this medication if your hematologist has recommended it - there are no foods, supplements, etc. that are anywhere nearly as effective. HU can save your life and make ET a very manageable disease.

I know this is a distressing diagnosis and that treatment sounds scary.

But it's not just platelet count you have to worry about with ET, but the stickiness of the platelets that make them clot-prone.

Most of us here have been on HU for years and are doing ok. Side effects are nothing like infused chemo you get with acute cancers.

Some questions for your doc that might help you get good info:

--What is my driver mutation, and how might that affect when and how much HU I have to take?

--Could I take anagrelide instead of HU? Anagrelide is not chemo. Pegasus (interferon) injections are also a good choice for younger patients, though getting insurance to pay can be an obstacle.

--What is my prognosis if I just take aspirin? If I do nothing?

People have a right to control their treatment, but they also have to accept the consequences. My thought is that coping with very mild effects of HU is easier than coming back from a stroke, heart attack, or pulmonary embolism.

There are TONS of alternative practitioners who'll tell you they can treat/cure you naturally. Their treatments will not be covered by insurance, they are very expensive, and they will not stop disease progression.

However, getting to a healthy weight, quitting drinking and smoking, staying hydrated, getting exercise every day, and eating a heart healthy diet can lower overall clot risks. Those things are "natural" treatments that can help you live a normal life.

I know this is a hard time for you. But please get more info before you reject conventional medicine.

Hi Terry @terese7 Essential Thrombocythemia is a blood condition where your bone marrow is producing too many platelets. This can lead to a number of potential health issues with the greatest risk being blood clotting such as DVTs, pulmonary embolisms or stroke. So your doctor is suggesting you try hydroxyurea to lower the level of platelets by controlling the over production.

There are some foods which can naturally lower platelet counts, however, if your ET is caused by a mutation in your gene that control the production of certain blood cells, such as the involvement of the JAK2 gene, no food or diet will reverse the condition. We’d all love to avoid using medications if we can do the same job by natural means but often this isn’t the case. So fortunately we have drugs on the market that we can take to keep us living full and productive lives in spite of our disease.
Here are a couple of informational articles for you that explain ET and why it’s important to treat the condition.
https://www.healthline.com/health/primary-thrombocythemia
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https://www.verywellhealth.com/essential-thrombocythemia-2860907#:~:text=Essential%20thrombocythemia%20is%20a%20rare%20blood%20cancer%20that,potentially%20life-threatening%20complications%20like%20heart%20attack%20or%20stroke.
~~~
https://www.verywellhealth.com/jak2-mutation-5217909#:~:text=Essential%20Thrombocythemia%20%28ET%29%20While%20the%20exact%20cause%20of,Like%20PV%2C%20ET%20is%20also%20a%20myeloproliferative%20neoplasm.
There’s also a current discussion in the forum discussion foods, diet and nutrition for people with ET.

Essential Thrombocythemia (ET): foods, diet, nutrition? https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/

Do you know if you have any acquired gene mutations that have caused you to have essential thrombocythemia?

Just chiming in . . . I was terrified to take my first HU capsule.

But eight months on HU (I take 10 capsules a week) has given me my energy back! I'm no longer incapacitated by constant headaches!

Those capsules protect my cardiovascular system from heart attacks and strokes, and my bone marrow from depletion.

Now when I take a capsule, I'm not scared -- I'm grateful.

Do you know if you have any acquired gene mutations that have caused you to have essential thrombocythemia?
My hematology results:
"have both CALR mutation as the driver plus JAK2 V617F mutation detected but at a very low level of 0.002% and this would be considered a clonal haematopoiesis rather than what is causing my ET". I am currently on Hydroxyurea 500mg a day and low dosage aspirin. My major side effect is tiredness/fatigue and blurred vision but i figure this is fair than the alternative ...clots

I can understand the 2 words cancer and chemo are extremely scary. But with ET Jak2, I've been on HU and baby aspirin for 3 1/2 years now, and don't have any problems. I'm old and I was never a high energy person, and personally I'm more afraid of a stroke or heart attack, so I'd rather take my chances with HU/aspirin

@bosmac,
Please see an ophthalmologist for your blurring vision. That does not seem to be an ordinary side effect of Hydroxyurea.

Blurred vision is not uncommon with Polycythemia Vera. Not sure if it’s from too high red cells or the JAK2 being positive so do some research. Not sure about with ET. I also take hydroxyurea and a baby aspirin. Good luck.

Thanks. I will make a follow with ophthalmologist and rule out any normal vision issues.