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ET and Polycythemia Vera

18 Sep 2019 09:40

Hello fellow ET’s l have just come across this forum and it has encouraged me very much reading your posts.

l was diagnosed with ET and PV - Polycythemia Vera nearly 2 yrs ago and like many of your comments it was rather a shock, however, it answered many questions as to why l would literally hit a wall and feel so completely exhausted that l had to go to bed. As l have a leaky aorta heart valve l was convinced this was the problem but after further tests it was only considered mild to moderate, so my GP suggested l have a blood test and check my cholesterol etc, this was when l was delivered the bombshell of blood cancers. 

I have been on 500mg hydroxycarbamide which over a period of 1yr has been tweaked from daily to alternate days, then trying every 3rd day ( my choosing ) however after discussion with my consultant 2 wks ago l am now on daily 5 days, weekend off. I hate taking ‘ my poison ‘ as l call it but l am so thankful for it really in the fact that it is keeping my bloods level and protecting me from heart attacks and strokes.

My side effects are extremely red soles and sometimes my palms. I do occasionally have fuzzy headaches. As for tiredness well l found out exactly what fatigue really meant, so l try not to over load my week which is hard as I’m a ‘ doer ‘ but at 69 perhaps ( only perhaps) l might be slowing down a fraction.

After the initial diagnosis it was a huge shock as no one wants to be told they have a chronic condition, but l soon felt so thankful that l hadn’t been diagnosed with Parkinson’s, MN or MS or something so very debilitating. I’m not wanting to minimise Blood cancers in anyway at all but with medication and trying to keep as fit as possible we can lead a fairly normal lives.

I have to say that l have had the best treatment ever at my hospital and l am so grateful to the NHS.

l wish you all well and as l like to say ‘ Onwards an Upwards ‘.

Thank you 


ET and Polycythemia Vera

20 Sep 2019 14:20 in response to JKC

Hello Jan. 

Just wanted to pop by and say welcome to the forum and thanks for sharing your story. I'm really glad that reading through some of the posts here has given you encouragement. 

It sounds as if you've got a good relationship with your clinicians and it's great to hear that you've had positive experiences at the hospital. 

I hope that things remain stable for you and that you're able to continue doing all the things you want to do - albeit at a slower pace. Perhaps Wink 

Best wishes, 
Cancer Chat moderator