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So.... I saw the haem today and she confirmed the diagnosis of ET. I had a BMB 3 weeks ago and have been having weekly blood tests as well as being on HU for about 8 weeks now. Started on 500mg twice a week, went up to 500mg 4 times a week, then 500mg daily - today has been increased to 1000mg 4 days a week and 500mg 3 days. Platelet levels are now almost 1900 so I am hoping the increase will start a reduction, because so far they have continued to rise every week. All other counts are good and no sign of any secondary issues (I had breast cancer 13 years ago so had some concerns there). No side effects from the HU so far. Thank you all for your welcome after my first post a few days ago and I will continue checking in for further information. A question ... how high can platelets actually go? Mine seem to be horrendous compared to posts I have read but my haem didn't seem overly worried.

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  • Hello Chris - my platelets were high like yours at the beginning and much much higher - don't know the top limits others may well do - but your Haem will know what's what - part of the initial "game" with HU is finding the right dosage for your body as it is a very individual thing - some are well controlled on quite low doses others need more - so your consultant is doing the right thing continuing to tweak until the right dose is find which is when you will see your counts start to go right down - I was on high doses in early years (3 and 4 capsules a day) and in recent years 2 a day so I have always erred on needing the bit higher dose - whenever we try reduce it again even by one a week up go the platelets again!! In other words all happening with you at the moment is normal!😀 All the best

  • Thank you Helpatlast ... you are exactly correct .... my Haem said it was like a balancing act finding the high enough dose to blast the platelets without impacting badly on the red and white blood cells. I never thought I would leave a Dr's office happy that I "only" had blood cancer !!! Now the work begins.

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