Hydroxyurea got ET, I am worried to be stuck with it for the rest of life.

[mustabshra]

Hello everyone, I was diagnosed with ET ( triple negative) 7 years ago, was on aspirin only so far. But recently my platelets count came 1500, and dr put me on hydroxyurea tablets a day. I am really worried bcz I heard it can cause cancer itself . I argued with my dr. That I will go to change lifestyle n eating habits but he insisted that I am at risk on any thrombotic event if not go for cytoreduction therapy. Any advice? Your experience with hydroxyurea?

[hunter5582]

With platelets at 1500 you may actually be at more risk for hemorrhage than thrombosis, though you are at risk for both. You would also be at risk for Acquired von Willebrand Disease, which is a bleeding disorder. Your hematologist should have already done a von Willebrand panel. Regardless, with PLT above 1500, cytoreduction is likely indicated.

You are correct to think that you are likely to need cytoreduction as a long-term intervention. However, HU is not the only cytoreduction option.

Another option for treating ET is Pegasys. Pegasys is often preferred for patients age <60 due to the long-term risks associated with hydroxyurea. Opting for Pegasys is often preferred for persons of childbearing years due to the risks associated with HU for people in this age group. Anagrelide is another option. Here is a bit about your options.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

I have used both hydroxyurea and Pegasys. While we are all different in how we respond, I would note that Pegasys was both more effective and easier to tolerate than hydroxyurea for me.

If you decide to proceed with hydroxyurea, there are some things to be aware of. here are some helpful resources.

drugs.com/monograph/hydroxy...

mskcc.org/cancer-care/patie....

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you all the best as you move forward.

[mustabshra in reply to hunter5582]

Really thanks for sharing your thoughts on my issue and also useful resources. I will definitely Check them out.

[svhagen007]

Hi Mustabshra, Like you, I have ET and am triple negative.

In my experience I have taken Hydroxy, Anagrelide and now Pegasus. I had some issues with Hydroxy and Anagrelide which were not good. Since you must be on a cytoreduction drug with platelets that high,

I highly recommend you consider Pegasus.

For me it is very effective, does not have side

effects and is easy to take. It is taken with a syringe using a tiny needle which does not hurt. I have a shot every 3 weeks and

don't think about taking it again for another

3 weeks. I feel very lucky that this drug is available for me. If Pegasus is not possible for you to take then Hydroxy is better than aspirin alone. Hydroxy will usually do the job

and you can take it for the time being but long term, Pegasus is a preferable drug.

You need to get your platelets lowered,

HU for now should be fine.