Hi Andrew, all we can do is to share our own experiences as everyone is so special and unique, with their own histories and medical experiences. Perhaps your medical team can give you the best guidance, but our experiences and handy hints are always useful and that is one of the real benefits of this safe space. We are all here to support you so please let us know how you are getting on, thinking and feelings. I hope others can help more.
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I have been on hydroxycarbamide for five years. So far the side effects have been fairly minor
Geoff
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Hi Geoff, what’s been going on for you?
Really good to hear that your side effects have been fairly minor! How have you been getting on over the past few months?
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My husband was diagnosed with Essential Thrombocythemia about 3 years ago after a routine cardiac check up and his platelet count was 1,400 (he was told a normal range is 300-400!). We can’t fault the NHS as he was seen by haematology within a week and was put on Hydroxycarbamide immediately, without waiting for further test results. He has since tested Jak2 positive but thankfully his condition is now considered stable with Hydroxycarbamide. He still gets 3 monthly blood tests but his 6 montly consultations to ensure he remains stable
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Hi @Leeanne, and a great big welcome to our forum, thanks for telling us about your husband. I believe the hardest and most forgotten job in the world is being the spouse or carer. I hope you do not mind me asking, how have you been feeling and how are you now?
I suggest that when people use abbreviations for their diseases there should be an explanation somewhere, either in the same letter or at the start of the whole collection of entries. There are so.many blood cancers. I have heard there are 136.
Geoff
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Hi @jumbo4, yes, you are right we are a world of abbreviations now and people get so used to using them they forget that often the rest of us do not know what they mean.
Yes, I think you are right with the number of different blood cancers.
The Blood Cancer UK website does give a list of many of the blood cancers under ‘understanding blood cancer’ if that helps.
Take care
My platelet count is 85 I worry about this but have been told reading is fine. It still worries me because I think it is low with not far to go
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Hi @Sandra, if you are really concerned perhaps you could re check with whoever told you it was fine for peace of mind. How are you doing in lockdown/tier?