@sdcgcarroll

While HU is indeed a chemo drug, taking the capsules is nothing like getting a chemo infusion. You're not violently ill and your hair doesn't fall out in clumps.

Do you know: HU also treats sickle cell anemia and mouth cancers? It has been in wide use for decades.

As with all drugs, some individuals do have side effects from HU. There may be some hair thinning, for instance.

For me, the worst effect is constipation, which I've addressed by adding fiber to my diet. Another effect is dry skin, so I now keep lotion readily available.

HU does make us more vulnerable to sun damage. Mineral-based sunscreens and floppy hats are my new best friends.

So why am I happy to take this stuff?

Because it frees me from the splitting headaches and utter exhaustion of ET! It protects me from clots and strokes. And it reduces the terrible strain on my bone marrow caused by ET.

It gives me hope of staying alive as long as my family needs me.

With platelet counts in the 600/700s, I was started on just one capsule of HU a week. I'm so grateful to my oncologist for that, because it helped me avoid any dramatic side effects.

I have hard-to-manage MPL-driven ET, so it took almost two full years to get my count under 400.

But relief from exhaustion and headaches started after just six months on HU.

For me, HU has been life-changing.

This is just my story! Keep scrolling through the ET threads to learn more!

@sdcgcarroll I have been on HU since February 25 my side effects have been fatigue, Thinning of my hair. I get short of breath. My skin & eyes are very dry, I use lotion every day, Also, Systane eye lubricant for my very dry eyes.