Hello,
I’m new to this forum and grateful to have found it. I have had Essential thrombocythemia (ET) for 8 years now. Two months ago I was started on Hydroxyurea. I’ve had to stop it for the time being. One of the side effects for me was extreme water retention. I was told it’s not a side effect of the drug, Did anyone else experience this type of side effect?
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Hi @dicam5 sorry you have had some initial problems with taking HU - unfortunately the treatments we use have very individual effects on each patient it’s very trial and error to find the right one - I have had many years of HU for Essential thrombocythemia (ET) and yes have found I tend to retain water but certainly nothing as you mention as being extreme and on all my checks from hospital my kidney function is ok - I imagine your consultant is keeping a good check with you and no doubt this was who stopped you taking the HU for now - do keep chatting with your team to see what they suggest next sometimes tweaks of the dosage help side effects or a change to alternative treatment - let us know how things go
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Hi @dicam5 - a huge welcome to our forum. I’m also very pleased that you have found us.
As @Jilly20 already mentions, effects of treatments can vary from person to person. I have a different blood cancer so am not able to comment directly, but I hope that others will share their relevant experiences.
In the meantime, it’s a good idea to keep a note of your symptoms and side effects so that you can keep your care team up to date.
Take good care,
Maggie
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When I was hydroxy for another type of blood cancer I too had to endure the odd uti but when I brought it up with a doc they suggested it maybe based on other meds I was taking or due to a combination of them.
If it’s not killing you I think docs tend to dismiss it but it’s certainly not the most pleasant things to endure. The best course of treatment is make sure you drinking a sufficient amount which is ironic.
Definitely bring it up in your next chat with a specialist and make sure they see the bigger picture rather than one just focused on your et
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