Hydroxycarbamide or not!

[azaelea]

Hello, I am new to Health Unlocked. I was diagnosed with Essential Thrombocythemia in June 5 days before having a Breast Lumpectomy. I have been prescribed Letrozole hormone therapy for 5 years for this and on reading side effects from Hydroxycarbamide AND Letrozole I am very undecided whether to continue with Hydroxy. Seeing Haematologist on Friday after fortnight on Hydroxy. Platelets are under 1,000 . Seem to be running for wee all the time and especially every hour through the night. Anyone else experience this. I think it can affect the kidneys.? I have been on Aspirin since mid June.

[forwardocho]

Morning

I have ET Jak2 Neg. I've been on Hydroxy for 3 years, and despite the initial side effects in the first 6 weeks, I've never felt so well. Unfortunately, all drugs carry side effects and everyone reacts differently to drugs. You may find you will be fine. I only had side effects in the first 6 weeks, but I was on a very high dose (4,000mgs daily). I'm now on 1,000mgs daily. I'm also on aspirin twice a week which was reduced from every day. The only other option I was offered for treatment was Anagrelide, which I declined as my consultant was concerned about the "depression" side effect aspect of this drug. Again, others on this forum suit this drug well, so its swings and roundabouts.

My platelets sit around 450-550. When I have a full FBC my liver enzyme is always included. Keeping well hydrated is key to this disease. My liver enzyme reduced from 79 to 41, and I believe healthy eating, exercise and plenty of water is the key!

All the best with your decision.

[azaelea in reply to forwardocho]

Thank you for your reply and information on how you are feeling on Hydroxy. I am researching as much as I can on ET treatment and your reply has helped. I shall post again when I have seen the Haematologist.

[forwardocho in reply to azaelea]

The initial first 6 weeks of taking HU were not pleasant BUT I get side effects from all medication. My body does not like medication! Fast forward 3 years and I feel the best I've ever felt. It's swings and roundabouts, as I mentioned, because what suits one person won't suit another. I still get my bad weeks (not from HU, but from the disease itself). I had a major surgery 13 weeks ago and I had to come off ALL my medication for 2 weeks. it was the worst 2 weeks of my life as it made me realise how ill I felt pre-diagnosis. I've never been so pleased to go back on my meds! When all is said and done this chemo is preventing me from having a heart attack and stroke. My platelets have been within normal range for the past year so it just takes time to get the dosage right.

Good luck with your research.

[Doggy1903]

Hello, I too take hydoxycarbamide. Diagnosed with ET last year.

I have just been in contact with haem regarding an irritable bladder. The nurse did say this was unrelated to meds, but perhaps I could let you know I get on .Hope you can get some help. I have visited my GP and am having treatment from their end.