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New to Hydrea for ET

Blood Cancers & Disorders | Last Active: Mar 6 10:50am | Replies (231)

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Profile picture for jodyjazz @jodyjazz

Many of you on here have said "when they got off" the HU. My cancer center said I would need to take it for life, and it sounds like some of you either just quit, or had an end to treatment. Please comment.

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Replies to "Many of you on here have said "when they got off" the HU. My cancer center..."

Hi @jodyjazz. Hydroxyurea (HU) has been a frontline treatment for ET for decades for millions of people globally. It can be very helpful in controlling platelet levels in patients with ET or other conditions.

As you can see by reading comments in the forum, not one medication fits all. While most patients have no ill side effects from HU, there are others who do have reactions. Sometimes it can simply require finding the sweet spot in dosages with the medication. Failing that, there may be other drug options that patients can discuss with their oncologists. And of course, there are some patients, such as @lehall125 who has had a more serious reaction and isn’t able to continue with HU.

The goal of treatment, for ET with elevated platelets, is to ultimately keep the platelets at an optimum/safe level and to keep them from sticking together, causing blood clots. Having the mutation on the JAK2 gene isn’t reversible. So people who have this conditon will most likely be on some form of treatment lifelong. Think of it as having a chronic disease where you take medication to control it.

Reading through some of your past comments I see you’re having issues with hair loss and have reduced your dosage. Hopefully that works for you with minimizing hair loss and also keeps your platelet level happy. Do you also take a low dose baby aspirin daily?