Essential Thrombocythemia: Making treatment decisions

The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.

If I were younger and had great insurance, I would certainly try Pegasus!

However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.

I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.

Lack of info is among the worst "side effects" of ET.

I've been on 1,000mg/day of HU for 11 years. My oncologist is the top doctor at a tier one medical center. He recently learned of new research and the dangers of long-term use of HU at a conference and has told me to get off hydroxyurea. He learned that the cancer risk of decades of HU was 3 to 4 times greater than any possible stroke risk.
He backed me down to 500 mg/day for 3 months, then took me totally off HU last week. He said he's had patients with one million and 1.5 million platelet count having no issues whatsoever.
He says the data presented at the conference showed approximately 8 to 10% cancer risk for decades on HU. He said he personally has treated about 40 patients on HU and has had four of them develop cancer.
He says he doesn't really believe that there is that high of a risk of stroke with high platelet count, but absolutely believes in the cancer risk. I told him I'll be concerned about the stroke risk and he said there's no comparison between having a stroke and having cancer.
I am off hydroxyurea for good.

That is very interesting. Would love to read the research and will try and find. There is always risks when taking any medication and down to individuals to decide what is acceptable risks. I am still resisting HU 5 years on from diagnosis but keep being told because of my age (62) research shows platelets need to be down to 400 and at the last test they were 811. I feel great apart from headaches, fixed by taking paracetamol and pain in hands but all minor. Facing ‘battle’ when see haematologist in March.

That is very interesting. Would love to read the research and will try and find. There is always risks when taking any medication and down to individuals to decide what is acceptable risks. I am still resisting HU 5 years on from diagnosis but keep being told because of my age (62) research shows platelets need to be down to 400 and at the last test they were 811. I feel great apart from headaches, fixed by taking paracetamol and pain in hands but all minor. Facing ‘battle’ when see haematologist in March.

That is very interesting. Would love to read the research and will try and find. There is always risks when taking any medication and down to individuals to decide what is acceptable risks. I am still resisting HU 5 years on from diagnosis but keep being told because of my age (62) research shows platelets need to be down to 400 and at the last test they were 811. I feel great apart from headaches, fixed by taking paracetamol and pain in hands but all minor. Facing ‘battle’ when see haematologist in March.

Obviously, the choice whether to take HU or not is yours, but please consider this carefully. Getting older increases the chance of developing blood clots from ET. Are you at least taking low-dose aspirin?

I just turned 70 but was diagnosed with ET when I was 68 a year and a half ago. But I found out the hard way. I have always been very active and in what I thought was good health until I had the stroke. A large clot had formed in my carotid artery which required surgery to remove. My platelets at the time were around 800, but between the time of my stroke and the results of my blood work and bone marrow biopsy, they continued to rise to nearly 900. I have been taking Hydroxyurea for the past year and a half, and have had very little side effects from the drug. I was lucky that the stroke did not leave me with any lasting impairments, but I do not want to chance having another….hence the drug plus a blood thinner (apixaban…Eloquis) to keep my platelets down and my blood flowing smoothly. Just to let you know, I had no symptoms that anything was amiss prior to the stroke.

That is very interesting. Would love to read the research and will try and find. There is always risks when taking any medication and down to individuals to decide what is acceptable risks. I am still resisting HU 5 years on from diagnosis but keep being told because of my age (62) research shows platelets need to be down to 400 and at the last test they were 811. I feel great apart from headaches, fixed by taking paracetamol and pain in hands but all minor. Facing ‘battle’ when see haematologist in March.

Are you also taking a baby aspirin daily?
That can be very helpful also.
Good Luck!