Hi, I am on week 2 of Essential Thrombocythaemia ('ET') treatment with Hydroxycarbomide, aspirin and Allopurinol and have noticed my veins are so pronounced particularly in my hands, arms and lower legs. Has anyone else had this happen please?
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Hi Judi - yes I know just what you mean it’s a very Essential Thrombocythaemia ('Essential Thrombocythaemia ('Essential Thrombocythaemia ('ET')')')/Hydroxy thing! (I’ve had Essential Thrombocythaemia ('ET') and been on treatment for 18 or so years!) - especially on Hydroxy it can be a bit of a hint that you need some more hydration - water is so important with Hydroxy - when I used to be working still I would notice my veins looking prominent and realise ooops not had much water drink some and your veins settle after a while again - even if you are drinking coffee or tea whatever you do need actual water too thro the day on Hydroxy not over the top but a water bottle with you and good sips usually keeps things working well 
as always tho it’s good to run it past your consultant especially as you are new to treatment and if you find water hydration doesn’t change it all the best
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Thankyou for your reply, it is amazing to hear you have been on the treatment for 18 years! I do drink about 2 to 3 litres of water a day to be honest and not sure I can drink any more! I will take it up with my consultant next week along with a full “shopping” list of other questions!. Thankyou again for your advice and good luck with your Essential Thrombocythaemia ('ET'), best wishes Judi
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Yes if you already keep well hydrated it will be good to chat to your consultant about it - certainly takes time to adjust to the treatment and of course we all react differently too you will be well aware of those things with your medical background. Yes I had 13 years on Hydroxy before then a few years using Pegasys interferon and last two years back on Hydroxy so lots of experience of treatment! Keep us posted how you get on
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Hello again @Judi, I see you’ve recently started your treatments for Essential Thrombocythaemia ('ET') and I happen to take similar for Polycythaemia vera ('PV'), another of the Myeloproliferative neoplasms ('MPN').
Dear @Jilly20 has offered her invaluable tips about hydration from living with Myeloproliferative neoplasms ('MPN') so well for so long, and I’d agree about drinking loads of water. As you already do this I wonder if noticing your veins more is because your blood is already thinning nicely? Just a non-medical guess.
My haematologist reminds me that while my treatments lower my haematocrit into its normal range, there is less blood and it’s thinner so can travel around my body more easily, including reaching closer to the surface.
Come to think of it, I’ve noticed my veins are more visible now 3 years since diagnosis. I blush more easily, heat up faster, and cool down quicker, which I think are all aspects of having thinner blood.
Do pass this by your own specialist though so they have a note of it and to check it’s not something else. You’re not in any pain from the veins being more pronounced? I’d say always pass any pain or discomfort by your haematologist.
If you’d like to pass this concern or anything else by the lovely Blood Cancer UK nurses then give them a call on 0808 2080 888.
Do please keep us posted about how you get on @Judi.
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Thankyou Duncan for your informative message. I agree with you that my temp regulaton is also very varied along with the veins being more pronounced. I see my consultant next week so will discuss with him. I am also very concerned about the immunosuppression from the drugs and wondered what others do about eating out, travelling etc. Does this make us more vulnerable to other cancers? There are so many questions to ask about this new world I have found myself in. I am definitely more tearful at the moment and still cant get my head round it all. The consultant just told me to go and live as normal as life as possible, is that something Myeloproliferative neoplasms ('MPN') patients can actually do? Sorry to go on but I just need to ask these questions for my own mental health let alone physical health!!!
Thankyou for listening and taking time to answer my ramblings, Kind regards Judi
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Aw you’re most welcome and perhaps your temperature being changeable like mine might be some sort of light relief for now. Not long till you see your consultant so do keep a list of any and all queries to ask them next week, like the ones you’ve posed here.
From my understanding, bearing in mind I’m not a doctor, our immunity can be weakened by Myeloproliferative neoplasms ('MPN') like ours. However, not necessarily! I check my blood test results and see that my neutrophils and other white blood cells are in their normal ranges, which should help my immune system fight stuff off, if I understand correctly what my doctor has told me.
Our main risk is clotting so the usual risks of flying apply to us and we can wear compression socks for that. Keeping hydrated is really one of the best things we can do generally, keeping our blood nice and thin and more easy to pump about even up at high altitude.
I’ve been told that with Myeloproliferative neoplasms ('MPN') we do have a very slightly raised chance of developing Myelofibrosis ('MF' or 'PMF') and in even rarer situations Acute myeloid leukaemia ('AML'), but I try to remind myself that Essential Thrombocythaemia ('ET') and Polycythaemia vera ('PV') are considered chronic types of blood cancer and thus are slow to develop, if at all. My haematologist doesn’t think I’ll ever have to face Myelofibrosis ('MF' or 'PMF') or Acute myeloid leukaemia ('AML') and will likely pass away from something unrelated to Myeloproliferative neoplasms ('MPN').
Although it seems bonkers, I’ve also been told to go and live normally. How?! Well, it takes a bit of practice but so far I’ve managed not to get ill since diagnosis 3 years ago, avoiding viruses and keeping active to boost my immunity. I haven’t stopped eating out, going to concerts and the cinema, but I’m just a bit more careful and wear a mask in busy places. I bet you can too.
Please never feel like you’re rambling, it’s so much to take in and I’d say let those tears out! I regularly let myself feel whatever I’m feeling and it does help to let it out. If you ever feel like it’s too much then do ask for further support and we can point you towards counselling or other ways to manage very understandably big feelings. What could feel bigger than the big C?!
Do keep us posted @Judi and keep that list of queries for your appointment next week, I’ll be thinking of you. Don’t forget you can also call the lovely Blood Cancer UK nurses on 0808 2080 888.
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Thankyou so much Duncan. Your kind words, great advice and general comforting comments are lovely to read. This forum is incredible and it is a real bonus to have. Thankyou again for your rapid reply. With great thanks Judi
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