Hi it’s me again, sorry to bother you all, I’m feeling very nauseous all the time, l’oss of appetite and a horrible taste in my mouth, I am assuming it’s the Hydroxycarbamide, anyone have any wonderful cures for this. Thank you. Keep well
LynnB
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Hi @LynnB this sounds miserable for you, have you asked your specialist nurse of medical team for handy hints?
Be very kind to yourself and I hope others can share their experiences.
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Hi @Erica, I thought I’d come here first, sometimes actual experienceis better. I’ll maybe phone my GP on Monday and talk to him
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Hi again LynnB - yes nausea and the metal taste in the mouth is a thing of Hydroxy - although it is good to run it by your team as each individual reaction is different in patients and if it’s affecting you too much it’s worth their check and possible tweak of dose. But one really big essential of Hydroxy is taking in lots of fluids, especially water itself, this really helps the metal taste (making it rare) and also any potential ulcers in the mouth sore gums etc. And it’s a thing of “more than usual” fluids - take with plenty of water and then hydrate throughout the day, bottle on hand wherever you are and keeping up the sips all the time - it does help a lot and all round is beneficial for Essential thrombocythemia (ET) itself. I know I was told that when I first had Hydroxy years back, thought I was doing ok on it as I always drank a lot anyway but learned by experience that it was very much this constant hydration through the day, having a bottle to sip from throughout that made the difference - as mentioned on another post I have recently gone back to Hydroxy after some years on Pegasys and have been doing this again, the odd days I haven’t done it enough the metal taste is there 
The other Essential thrombocythemia (ET) thing is to eat little and often and good protein which helps a little with the fatigue hits. But do check with your team too if it doesn’t improve in coming days
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Hi @Jilly20 thanks for the info, I do tend to drink a lot during the day, then I’m up all night going to the loo 
My hospital is over an hours drive each way away, so I can’t just pop in and get something, that’s why I think I’ll speak to my GP, he’s very good and in the village, in fact he is a neighbour of ours. Think I’ll phone him on Monday, he’ll call me back and I can have a phone consultation with him. Does this ever go away? Off to Spain in 3 weeks! Have a good weekend
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I can’t remember how long you said you have been on Hydroxy? - as yes as the body adapts to the meds it can settle down along with you finding the things that help - it does take time - unfortunately the nip to the loo thing is a thing of Hydrea too so may become part of being on it as a treatment 
my well worn statement is that the treatments are there as our friends working away to assist us even when there are times they don’t feel so friendly 
.
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@Jilly20 - I’ve only been on it a week, just 2 weeks since my diagnosis, so I’m new to it all, that’s why you’ll see lots of silly questions from me 
a lot of my other meds give me a dry mouth as well
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Hi @LynnB don’t you worry there are no silly questions on our forum.
I reckon you are doing brilliantly, it is only 2 weeks since your diagnosis.
@Jilly20 quite rightly said that it is ‘good to run it past your team’ as we recently had someone that was on a medical liquid restrictive diet because of another medical problem they had.
Be ever so kind to yourself.
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Ah I see LynnB yes very early days for you - don’t worry it does all adjust in a bit of time both the diagnosis and the treatments - in case you have not found it Myeloproliferative neoplasms (MPN) Voice is the charity for the conditions - and they have a lot of helpful info on their website and they arrange in person forums on occasion - I know when I first used those many years back it was very helpful to just meet others with the exact same “rare” blood cancer! - the ladies working with them also have a Myeloproliferative neoplasms (MPN) which makes it especially supportive - and they run on line bits every so often with specialists that work with MPNs which are helpful.
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@Jilly20 Reporting that I am feeling a whole lot better now. The nausea seems to have gone. Still no energy, but with the weather we have had in Scotland there’s no wonder. Trip to Spain will be be great I hope. Thanks for your support
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Oh @LynnB very personally I think be very kind to yourself, you have been through so much emotionally, medically, physically and practically it takes a long time to build your energy back up.
Spoil yourself and please do keep posting
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Ask your GP for a dry mouth spray
It’s an artificial saliva which you can use often
A lot of treatment can give you a dry mouth and metallic taste
Also keep hydrated. The roof of your mouth will let you know when your dehydrated you will feel little ripples. They plump out when you drink plenty of water
Anti sickness tablets are helpful for the days you feel nausea
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@2DB - many thanks for that information, very helpful
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Excellent glad to hear it Lynn - next stop Spain eh !! Enjoy it and have a nice Spanish coffee for me 
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two weeks and counting! In need of some heat after the summer here in Scotland! Take care x
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