Preparing to take hydroxyurea?

This photo has nothing to do with Hydrea; 

I just want to show off my cat, Flora, who 

is pretty, affectionate, and well behaved,

but does not want to pose for pictures.

This month I have my quarterly CBC test. At my March test, my platelets were up about 100 points, to 735; if they've risen, I'll need to contact my hematologist to see about starting hydroxyurea (Hydrea).

In getting myself prepared for the possibility of starting oral chemo, my first question is: How well does it work in reducing platelet counts that contribute to blood clots, the main danger with ET?

That question was answered 20 years ago in an article in the New England Journal of Medicine. Researchers followed 114 ET patients for a little over two years. They found that, among the control group (those taking no Hydrea), the incidence of a clot was about 24 percent. In the group taking Hydrea, the incidence was about 3 percent. The platelet count for those taking Hydrea stayed around 600. Those not on Hydrea had blood counts that varied between about 450 to 1.5 million.

Only 4 patients developed bleeding, just one was in the Hydrea group.

So, yup, it works, and that's why Hydrea remains the go-to drug for patients with ET.

But remember that a lot has changed in 20 years, and I will also want to know:

1. What is the link between Hydrea and leukemia? The 1995 study showed that about 6 percent of Hydrea patients developed leukemia, so I want to know more about that. Some doctors prescribe anagrelide (Agrylin), which isn't associated with leukemia. However, there are some cardiac side effects of Agrylin that I talked about with my cardiologist. He said he would not recommend that for me.

2. Will I have to take Hydrea for the rest of my life? That seems likely, since it's impossible to predict what your platelets might do if you go off the drug.

3. I know of no study that has tested whether Hydrea is more effective for those with JAK2 or CALR genetic markers. Tests have shown that those with CALR-type ET run higher platelet counts BUT have lower clotting incidents. So I want a clearer answer about what type of ET I have. (I tested negative for JAK2, but that test runs false negative 20 percent of the time.)

Remember that JAK 2 inhibitors like ruxolitinib (Jakafi) may be prescribed for some ET patients. In the U.S., Jakafi has not been approved for ET by the FDA, though some doctors are prescribing it as off-label treatment. Insurance companies are less likely to pay for off-label prescriptions, and Jakafi is pricey ($10,000 per month in my area).

Aside from fatigue, a common complaint of those taking Hydrea is mouth sores, something my dad, who took Hydrea for his ET, had to contend with. Oncolink, operated by oncology health care professions, offer these tips for oral hygiene on its info page for Hydrea:

• Brush with a soft-bristle toothbrush or cotton swab twice a day.
• Avoid mouthwashes that contain alcohol. A baking soda and/or salt warm water mouth rinse (2 level teaspoons of baking soda or 1 level teaspoon salt in an eight ounce glass of warm water) is recommended 4 times daily.
• If your mouth becomes dry, eat moist foods, drink plenty of fluids (6-8 glasses), and suck on sugarless hard candy.
• Avoid smoking and chewing tobacco, drinking alcoholic beverages and citrus juices.

Anybody with tips for managing side effects with Hydrea or questions to ask about it, please chime in.

Be well!

Related: What patients say about Hydrea

Related: Jakafi, oral chemo, and drug costs

Home