Hello Mikey1962, 

Thank you for sharing your experience. It's great that you are keeping so active and running 5K twice a week. It's great that your consultant is seeing your regularly to monitor your condition and it's important that you talk about what is worrying you about this medication. Your consultant will be in the best position to tell you more to help you make an informed decision. 

I hope that you will hear from others who have had a similar diagnosis and have faced a similar treatment decision with hydrauxeria. If you ever feel the need to talk things through with our nurses, you can give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi [@Mikey1962]‍,  I too am an "ET" as well as being 58 (Next week).I was diagnosed 2 years ago after a routine blood test for my Underactive Thyroid showed up as having a high platelet count, at the time my count was reading in the 1200's and has been regularly monitored with nothing more than aspirin to thin out the blood somewhat, I have remained generally well, with the odd episode of either my fingers or toes tingling (painfully) and any dip in termperature sent my fingers either pure white or navy blue. 

I was told by my consultant that whichever came first I reached 60 or my count went over 1500 for two consecutive readings,  would be mean that I would have to start treatment(Hydroxycarbamide)

I did enter into a discussion with my consultant asking if I remained feeling as normal as I did despite my count being high or reaching the big 60, if there would be some negotiation on the start of treatment, (thinking if it's not broke, why fix it), to which he came back and said the point is it is broken, and the treatment is used to prevent, Thrombosis, or a stroke. As my one fear is having a stroke, even before I was diagnosed, this news pulled me up short and made me realise, prevention is better than a cure. 

Following my last consultation and having the 2nd tick in the box, marked the start of my treatment, I must admit that when it came down to the reality of it, I completely fell to pieces, I think it was more the fact that it's Chemotherapy, well I am now on day 3 which is very early days, but as yet I have not glowed in the dark :happy: nor have I experienced any side affects. Hopefully it will continue in the same vain, and I can continue to function as normal. I had read prior to this that the best time to take it, would be on a night and this is what I am doing, I will check back in, in another couple of days with an update.

All decisions for treatment are a very personal thing, however I would be guided by your consultant and look at the risks of not taking it. 

Hope my little tale, helps. 

Hi Zanylady, 

I am so pleased to see your post, and am sorry i have only just seen it to reply. I'm sorry to hear you count has meant you are now taking the Hydroxyurea. My consultant gave me the same options i.e. age 60 being the shut off point when she would insist. I guess I'm frightened and possibly shouldn't be, as many people younger are accepting the advice to prevent thrombosis. As your consultant said it is broken, so it needs fixing. Its just that not being able to see or feel it  , masks the problem.  I am so interested to hear how you are managing now its been in the last few months. I'm sure you will be telling me your worst fears have not happened and life goes on and i pray that is your experience. In any case like you said everyones situation is individual. My count is now 850 and my consultant was on my case when i saw her to consider medication. I hope I'm not being stubborn or is the correct word stupid?

Look forward to hearing from you

Hi Mikey1962.

I am happy to report that as far as the treatment is concerned everything is great, :.

I started out taking a single  tablet, and was monitored two weeks later, only to be disappointed that my count had actually gone up slightly, I was then asked to take two tablets on one day and just a single tablet on the following day alternating each day, my next appointment again two weeks later, saw a significant drop down to 1100, I was so pleased with results, although I did get the feeling that my doctor, wasn't as impressed as I was, the dosage then changed to 2 Each Weekday and 1 each day of the weekend, and so the count dropped yet again to the 800's, I have remained on this level of treatment now being monitored at six weekly intervals,  at my last consultation my count is down to the 400's, :happy. Of course when they get me to where I need to be around 150's then the fun will begin finding the correct dosage to maintain the levels.

I am also happy to report that all my fears were very much unfounded, I don't seem to have suffered any side effects, maybe a couple more headaches than usual, but nothing unmanageable and nothing that a couple of paracetamol doesn't sort out. I do take this medication on a night, and initially I was taking them with a sip of water just before I got into bed, until one night after about an hour I was woken up with a pain in my chest, I think it was the tablets still sat in  my esophagus, I got up and had a good drink of water and sat up for half an hour and I was fine, now I take them about an hour before bed with a good drink of water and can say I have not had any more problems.  So as you can see Mikey, my experience has been extremely positive, the other positive is that once my levels have stabilised I will only have to go for tests every 3 months.

Only you can make the decision of when to start treatment, and hope that my experience has allayed some of your fears, as a foot note I also take Blood Pressure Medication (Amlodopine 10Mg), and this treatment has not interfered with that or anything else for that matter.

Please keep me posted on how you are getting on.

Best Wishes. 

I must say that i am so pleased to hear how you are doing. It is so reassuring to hear that you are in a good place having started to take the medication. Importantly none of the concerns re side effects have really been an issue for you. 

Your right it is an individual decision and each person will have a different experience, but i can't deny i feel encouraged by your positivity. I'm due to see my consultant in January and if my count has increased significantly, i will have a decision to make, made easier by talking to you. Thanks