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

Posted by anavleek @anavleek, Apr 9 10:58pm

I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.
Doctor suggested I take a baby aspirin everyday and HU. I am hesitant about taking HU. I have heard of doctors waiting till the platelet count is higher to take HU.
Any insight? How bad is HU for your body, I was reading it can cause cancer too.
Thank you

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sylann725 | @sylann725 | Aug 20 6:06pm

In reply to @arecchie "You might want to do your homework before saying such things. When you first get the..." + (show)

The instructions I received with the capsules said do not touch them with your hands. When taking the capsule I dump it from the prescription bottle into a small disposal cup (bathroom dixie cup). I fill my mouth with water and empty the capsule, from the cup, into my mouth. This has worked for me.

ednels | @ednels | Aug 20 8:27pm

I am brand new to this forum and have yet to be formally diagnosed by an oncologist/hemotologist. That said, my last routine blood test had a platlet count of 867, so I'm trying to learn as much as I can before my appt next week. I also have a JAK2 V617F mutation. Just turned 75. Retired Navy. Thanks to all of you who have posted comments on this thread.

cec2 | @cec2 | Aug 21 11:04am

I have a question about the effects of HU. The doctor, PA, and I expect I'll have to start it at some point (he said when my count is over 600k), as my last count was 581k. I know it reduces production of platelets in the bone marrow, but does it also reduce the production of red blood cells and white blood cells? My counts on those are fine and don't need to be reduced.

I know these are questions for the doctor at that time, but this forum is such a great resource I'd like to hear from those who are taking it. Are your other blood cell counts okay while taking HU?

Thanks.

cec2 | @cec2 | Aug 21 11:28am

In reply to @ednels "I am brand new to this forum and have yet to be formally diagnosed by an..." + (show)

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.

janemc | @janemc | Aug 21 4:44pm

In reply to @ednels "I am brand new to this forum and have yet to be formally diagnosed by an..." + (show)

Are you taking any meds yet?

If your oncologist advises a low-dose aspirin, purchase it in coated form. Low-dose aspirin makes our platelet-heavy blood more fluid, protecting us from clots and strokes.

If your oncologist advises hydroxyurea (HU), please be aware that starting at a low dose may be helpful. At first, I took just one 500-mg capsule each week. Then the dose was gradually increased. I believe this is why I've never suffered any ill effects from HU.

You can wander through the threads and learn so much. You can also use the search bar at the top to focus your search.

Having your questions ready for your appointment is crucial, because oncologists are busy people.

janemc | @janemc | Aug 21 4:49pm

In reply to @cec2 "I have a question about the effects of HU. The doctor, PA, and I expect I'll..." + (show)

HU does suppress production of all blood cells. I believe this is one reason that, once we begin taking HU, our blood counts are frequently checked.

In my case, despite my high HU intake (15 capsules a week), my white and blood cell counts have been just fine.

What have others experienced?

ednels | @ednels | Aug 21 7:55pm

In reply to @janemc "Are you taking any meds yet? If your oncologist advises a low-dose aspirin, purchase it in..." + (show)

Thanks for the info. I've been taking low-dose asprin and blood thinners since a stroke in 2016. I'll know more when I see the oncologist next week. I have a lot of test results to discuss with her!

lehall125 | @lehall125 | Aug 21 9:19pm

In reply to @cec2 "Hi Ana, Your question and comments and the replies are already helpful to me; my thanks..." + (show)

@cec2

Hi Ana,

Your question and comments and the replies are already helpful to me; my thanks to all.

I just found this forum and this page popped up. I don't know if anyone will see this reply but here goes.

My story and limited knowledge, so far:

I've recently been diagnosed with JAK-2 positive ET and sent to a specialist. Other causes of my high platelet count were ruled out but no blood marrow biopsy was done. My platelets have been slowly and steadily increasing for quite some time and are now 518k. Everything else is normal. The specialist said if they get above 600k he will put me on Hydrea. He said it is a chemo drug, but not to freak out because for most people it is well tolerated and "just a pill you have to take." He said for most people it doesn't make you throw up or lose your hair. He also said ET can (rarely) progress to a form of leukemia in a very small percentage of cases, or cause blood marrow problems, but the biggest danger is blood clots which can cause strokes, heart attacks, or go to the lungs fatally. He put me on a low-dose aspirin a day to make the platelets less sticky. Btw, I have no real symptoms, just the high platelet counts.

I've of course been reading like crazy about this disorder and the drug. I just finished reading two clinical studies tonight and then found this forum from the same Google search. I'll share what they said. Some of it was Greek to me but some was in plain English.

The studies reassured me (and I hope they will reassure you), because both agreed Hydrea (by any of its names) is often the first line treatment for ET, especially for people over the age of 60 or who have had previous blood clots. Much younger people may be given something else first. I haven't had clots but I'm 78, so I sure qualify age-wise! (Yes, I know I'm blessed to not have had the problem sooner.) The studies showed that Hydrea did reduce blood clot (they used the medical name) events, and had a lower incidence of causing leukemia than some of the other drugs that could be used for ET. The studies reassured me. (I hate to take meds because I know they go all over your body and can do unintended things, but I know sometimes they can be life savers.)

My specialist said they don't know what causes ET, nor how to prevent it, and nothing I did caused it. It's not known to be hereditary (thankfully) and is rare. It's not curable but is treatable, and the prognosis is good. He said it is technically a form of blood cancer but he'd prefer to call it a blood disorder or blood condition. It's not invasive. It was a bit unsettling to have to go to a cancer center but I'm thankful to have good doctors nearby. From what I've read life expectancy is about normal, especially for those 60 or older. At my age I probably shouldn't worry about ET!

The PA I also met told me I'll likely have to go on Hydrea because I'm already so close to 600k. I think, just as with all meds, we have to weigh the risks to the benefits. Hydrea has a very small risk of causing leukemia, but ET itself also has (maybe a larger?) chance of causing it, too. And the risk of fatal blood clots is a huge factor.

All the replies here have made me feel so much better about having to take this drug, if I do. I admit I didn't want to even think about it. I have to go back in 3 months. THANK YOU, THANK YOU, all!

And Ana, good luck to you, and everyone else, with your treatment. I share your concerns. Please post how you are currently doing.

(Sorry so wordy. I'm a fast typist which is probably a forum curse, LOL.)

J. (cec2)

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Hello Ana. I was diagnosed with ET a year ago but did not want to take the hydroxyurea. However, my platelets continued to go up to 646 and my referral to the Mayo Clinic for a bone marrow biopsy confirmed my condition. I am CALR + but JAK2- so that was a bit of good news. I have been taking the medication since May, 500mg MWF and my platelet count dropped to 542. But when it went back up to 577, my hematologist added Sat. I am experiencing hair loss and some fatigue, but I continue to work out 5-7 days at the gym. Today, I was diagnosed with colitis because I have been taking the hydroxyurea without food. So I will make sure I eat before I take the medication. I understand your concern as I also share the same. However, for me, I am 73 and have a 5, 4, 3 year old grandchildren, and another one to be born the end of September. I am otherwise very healthy, take no other medication, eat an inflammatory diet, but had to choose between not taking the medication or taking the risk of a stroke. They were the reason for my choice. Thank you for sharing in this group.

cec2 | @cec2 | Aug 21 11:06pm

Thanks for the replies!

nypara66 | @nypara66 | Aug 22 5:59am

In reply to @cec2 "I have a question about the effects of HU. The doctor, PA, and I expect I'll..." + (show)

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!

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