Went to haematology clinic yesterday my blood count was up from 39.6 3 weeks ago to 46.5 so a venesection is booked for Friday. My platelets are down but still high they are 4565 but they were 4756 3 weeks ago so there is talk of me starting on hydrea. I am having a talk to a nurse on Friday . They think that I will need Venesections every 3 weeks. I have had a few venesections since being diagnosed With PV about 5 weeks ago after a stroke so not worried about them. It is the thought of taking a chemotherapy drug that scares me. Any advice would be helpful.
Happy Christmas and a Healthy New Year to all.
Written by
Janet46
To view profiles and participate in discussions please or .
Which test result does your blood count refer to? I cannot believe that your platelet count is as high as 4565. Mine was about 1000 a year a go and I was started on a "gentle chemotherapy" drug called Hydroxycarbamide, 2 x 500mg plus 75mg aspirin daily. I do not get any of the symptoms that go with ET and I tolerate the Hydroxy well, really without any physical side-effects but I stopped taking it regardless and I felt a huge relief when I was not taking it anymore. Since then I had a blood test and my platelet count had shot up from around 450 to 1130 again. I thought I better start taking the Hydroxy again, mainly from fear of the unknown but how are you managing your life with a platelet count of over 4000?
I did not have any symptoms of ET and also I did not really have any side-effects whilst on Hydroxy except for feeling like I am under some sort of a constriction. The whole thing just makes me feel upset and angry, I feel I am treated like a number, a text book case, I don't know why I feel like this. I went to see a private doctor in Harley Street and my platelets had shot up to 1300 so we both agreed that it would be better I started again on the Hydroxy. My next appointment is at the beginning of January and I will have to go and face the music from the haematology dept.
Hope that the heam in January are not too hard on you.. I'm just getting over D&V bug and could not take my chemo for several days, the result was the return of burning hot hands with pins and needles.
Don't be scared Janet. I started taking Hydroxycarbamide in October, 4 weeks later with no change in my platelets the dose was doubled daily, another 4 weeks on and still no adverse side effects from the medication and my platelets have started to come down.
As I am sure you have read many times, drink lots of water. I found it hard in the beginning but now it feels normal.
I endorse what Mica11 says. I've been on hydroxycarbamide(urea) since February this year with no identifiable side effects apart, possibly, from a little touch of constipation which is easily remedied. (And that may be nothing to do with hydroxy as I've always had that tendency.) My platelets have come down to the 'normal' range and I'm taking 10 capsules a week - I started with 1 a day but that didn't appear to make much of a difference.
I’ve been on hydrea for approximately eighteen months with no adverse side effects. I was shocked when the haematologist advised that I begin hydrea as my platelets were only 500, and I had no other health conditions. However, I was 60 years of age at the time of diagnosis, so was considered high risk. I’m only on five tablets a week, so I imagine with your lowish counts you won’t be on a very high dose too.
The hardest thing for me was taking that first tablet, after that I didn’t think about it. You have to detach yourself from the ‘what ifs’ and acknowledge the protective factor this drug will offer you from any further potential strokes.
Hi Janet it can be overwhelming when we get a diagnosis and the prospects of treatment - but you will adjust - many of us have been on HU for years and do well - I have been on it twelve years many of which I worked full time - there may be some adjustments as you start depending on the dosage but like all things once the body adjusts its fine - just keep logging in here and everyone will support you and you will find much information from past posts. Far better to be treated and keep safe blood count levels than the dangers of what abnormal counts can lead to. I always say think of the meds as friends working to assist and keep you safe. All the best
Hi Janet, my platelets soared up to 1067. Be careful with venesections as my iron level got so low I fainted one day and this was mega scary. I was terrified, petrified, depressed .... etc... about the recommendation of going on Hydrea, however I did "bite the bullet" and now my platelets came down to 736 - far better than the risk of stroke or heart attack. I feel very fortunate and happy to report that I haven't (so far after about 21 days) had any side effects. I drink a lot more water now and especially when I take the capsule. I'm more relaxed now about it all.
Hi Janet, I have been on hydrea for about eight years now, I take four capsules a day.
I felt the same as you to start with, but needed to take them, the results were good. Last year I attended a talk by a specialist haematologist and found this very helpful. He discussed all the new drugs, pros and cons, and when I went home I new for sure that the hydrea was best for me at this stage. Hope this helps.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hydrea on wrong day. . .
First time taking hydrea
Venesection failures
Venesections making me feel worse.
