New diagnosis Polycythemia Vera

I was concerned not to have mouth ulcers when I went on Hydroxycarbamide, so I went straight to drinking 2 litres of water a day. I don’t count coffee, although I would count herbal tea, though now I still take 2 litres in 4 x 1 pint glasses, and anything else is extra. Someone said they had ulcers, and then realised they were meant to drink more water, and the ulcers went away.

I also experimented a bit with the timing of the chemo. If I took in the morning or at lunch time I was sleepy afterwards. I now take it at night after my evening meal. I now sleep much more soundly at night, and sometimes struggle to open my eyes if I need to go to the loo! I have never taken it without something in my stomach. Supposedly it doesn’t matter, but I figured that a capsule lying on the stomach wall may not be what I wanted.

After two years on H, I seem to have no side effects. I did have some problems with my hands and feet…tingling, discomfort, pain, in the first year, but they seem to have settled.

All the very best for your journey…keep dancing and listening to the music!!


clickinhistory Thanks for your kindness. I made matching pinafore dresses for my grandchildren and it took a lot longer than in the past as you said losing focus and concentration. Didn’t get started with decluttering yet as my eldest daughter rang and said she was going for breakfast. Such a nice way to start the new year, all my children, grandchildren, son in law and me all having breakfast. Then we spent the rest of the day looking at holidays for the summer.

Modesigns thank you for your kindness. I rinsed my mouth out daily with salt water and that has cleared up the mouth ulcers. I take my chemo with my dinner as I take other medications in the morning. I find that I need to take medications with food or my stomach gets upset. It is great to hear that you seem to have no side effects and I hope that continues for you.

I am so grateful to everyone who has taken the time to respond. You have all made me feel so welcomed.


@Liz59 full English breakfast verses decluttering, think the universe is tying to tell you something :wink:


clickinhistory you may well have a point :thinking:


@Liz59 maybe a rearrangement of the collection to remind you of why you have it :wink:
and I hope the breakfast included brown sauce lol

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Oh, no, @clickinhistory it has to be tomato sauce!!!


@Erica oh dear, we were getting on so well despite your hard addiction to pure H2O.
Red sauce is for the wee ones and only belongs on grown up fish finger sandwiches if tartare sauce (rough cut) is not available :smile:


Oh @clickinhistory I am only a wee one at heart!!!

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@Erica I refuse to be ungentlemanly about sizes :wink:

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