Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive Jak2 mutation. I was very concerned about taking a chemo pill. In the beginning I did have some headaches, fatigue, and ocassional constipation. Afternoon fatigue is still a side affect, but I plan to start walking to build leg strength. My platelets are now in normal range at 356. After loosing 3 siblings to blood cancer I chose this treatment. Do what is right for you! Trust who you choose to oversee your medical needs. Do your research, this Forum helped me tremendously!! I am 70. I scheduled a conference with my doctor and included my husband and son. Write your list of questions down. Fill your spirit & thoughts with good things. I sit outside in the morning, I love birds and it’s a perfect place for my prayer time. I ‘ll be praying for you.

Does anyone else have any experience with higher doses of HU? I am on 1500 daily and have hair shedding, nausea, headaches and fatigue. My white cells are so low I am living like it is the pandemic. I am 55 diagnosed in November 24 and started HU in June. My platelets are only slowly decreasing and now at 600. I am hoping to hear my dosage will be going down sooner than later.

Does anyone else have any experience with higher doses of HU? I am on 1500 daily and have hair shedding, nausea, headaches and fatigue. My white cells are so low I am living like it is the pandemic. I am 55 diagnosed in November 24 and started HU in June. My platelets are only slowly decreasing and now at 600. I am hoping to hear my dosage will be going down sooner than later.

It can but it’s just a slight amount. My guess is he will start you on seven days a week and you’ll wind up on 3 or 5X a week to maintain. You will see results within the first month. Two months lowered mine 250 points. Good luck!

I have been on HU for ET for 11 years. I am 81 years old and active. My blood counts have been very good. I see my hematologist every 3 months and no longer worry about strokes. FYI I have a full head of hair.

Thanks for the replies!

Actually, it depends on the person. HU made me lose hair and vomit. My hair was coming out in clumps. After I started taking Essential Amino Acids (Doublewood brand), my hair stopped falling out and grew back in, albeit a little fuzzy now. HU also affects my digestion, including nausea and vomiting. I take some supplements and herbs to help counteract that side effect. Here’s the reason why. Chemo targets rapidly dividing cells, which is why HU works so well for ET. My high blood count stays under control with the med. But hair follicles and mucous membranes are also rapidly dividing cells, thus the hair loss for some people. Chemo degrades the mucosal barrier of the digestive system, given that it is made up of mucous membranes. Some people are not affected at all, but I am so I take a few things to help in that area, and I have to continually keep Candida albicans overgrowth in check. Mouth sores is another side effect of chemo, because of mucous membranes in the mouth. I was getting just one at a time, then I read on here the recommendation to use a zinc mouth wash. I opted for zinc lozenges which I suck on once or twice per day, and no more mouth sores. It’s so different for everyone, and I hope for the best for you on your journey.

Best wishes for your upcoming appointment, edriels.

I too have the JAK2 gene mutation. I have no symptoms and was diagnosed in April. I've only seen the specialist one time, and because I'm over 60 (age 78) he said I was high risk for blood clots that can cause strokes and heart attacks, which is the big danger with ET. He put me on one low-dose (81mg) aspirin a day to make the platelets more slippery and less likely to form clots. He said he would prescribe HU (Hydrea) to reduce my platelet count if my count got above 600k, which it most likely will as it's been increasing steadily and was 581k last time.

I've read that some doctors don't prescribe meds until the count is higher but that's what he said for me. I guess every patient is different.

He said they don't know what causes the gene mutation, that ET is not hereditary, I wasn't born with it and did nothing to cause it, and they don't know how to prevent it or cure it, but it can be managed.

From all the reading I've done on well respected websites, HU is usually the first med they use for people our age with ET, if they think meds are needed. It seems to be the one most people can tolerate and it may be the safest one as well. I am wary of taking it (or any meds actually) but I will if he says I should, because I don't want to have a stroke or heart attack from blood clots.

My oncologist/hematologist was very optimistic with me, and says he prefers to call ET a "blood disorder," although it is technically a form of blood cancer. But it's not the kind of cancer that's invasive or spreads to other organs. It's a cancer because too many cells are produced. The main danger is blood clots, although in a very small percentage of cases it can progress to something worse, but that isn't common. He said HU is a chemo drug but not one that has bad side effects for most people. It said it doesn't make you throw up or lose your hair. He was very reassuring to me. From what I've read life expectancy is about the same for people with ET who are treated as it is for other people.

I'm not a medical person but am sharing what I was recently told by my specialist so you'll know some things your doctor may tell you. You might already know it. Prayers and good wishes for a good outcome for us all.