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Essential Thrombocythemia: Making treatment decisions

Blood Cancers & Disorders | Last Active: 5 days ago | Replies (187)
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@nohrt4me

There have been a few remissions with Pegasus. No one is calling it a cure. Peg does seem to arrest disease progress, which anagrelide and hydroxyurea do not. It has side effects, notably depression, that makes it a poor choice for many elderly people.

If you are being scared off anagrelide and hydroxyurea by homeopathic practitioners, remember that they have a monetary interest in fear mongering. Doctors now tend to prescribe the lowest effective dose of chemo. The people who have most trouble with it are those who wait until their platelet counts are sky high and they have to start out taking high doses of the meds.

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Replies to "There have been a few remissions with Pegasus. No one is calling it a cure. Peg..."
IKEALover | @healedbytheblood0119 | Feb 5 7:19pm

Hi,
Even if it’s not a cure for everyone just knowing it will stop the progression to even worse conditions seems worth it.

Not being scared off by homeopaths but they were real ppl who took one or both those drugs.

The side effects they spoke of even on the 1 pill 500mg a day were harsh. Skin and other cancers, hair and nails falling out, vertigo, etc.

The Anag drug many ppl said they experienced, and their Hemas and MPN Specialists said they likely will and their other patients have gone into A fib and had heart attacks.

The thing is many ppl including myself aren’t waiting but their Hema is saying can take baby aspirin until platelets count reach a million or more, maybe even forever. Said doesn’t matter how high the count but if blood is thinned.

Also the Hemas don’t admit that animal products and vitamins supplements of B12, K, C, D all raise platelets in food and vitamin form. So stressful.

I’ve witnessed this personally and am now having to go back vegan bc of it.
Was 625 platelet count vegan (likely for years undiagnosed) then was told animal products could help so tried and as of Dec 20 the count was 825. Only 3mo after switching to non vegan.

I know it’s even higher since then and don’t go back for blood till March 20.
But changing diet back and stopping multi.

I have yet to meet anyone who has a Hema who spend enough time with them in the appointment. It’s sad but that’s how most mainstream doctors are.

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