Hello everyone,
I’ve been reading this forum for a while now as I was expecting to join you all following recent blood results.
Last week I got the diagnosis of ET.
Not sure yet how I feel.
I’m glad I have a diagnosis and an explanation as to how I’ve been feeling, burning hands, dizzyness, etc but it’s scary knowing that I will always have to be checked.
I’m classed as high risk due to my age and having high blood pressure so I’m on aspirin and hydroxy urea.
Anxious about how the hydroxy urea will make me feel.
I feel though that the hardest step was getting the results so onwards and upwards.
Nice to finally meet you all.
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Hello @May14,
Welcome to the forum. It is a very strange feeling when you get diagnosed with blood cancer (Is ET Essential Thrombocythaemia? I’ve not heard of it before) but as you say, it can be helpful to get a clear diagnosis and a treatment plan and I hope that you wont feel too bad on the hydroxy urea. These days all the side-effects have to be explained so clearly but this can be scary too. I’ve sometimes thought ‘will this treatment be worth it?’ but I’ve gone for it every time and here I am over 10 years later, with a different type of blood cancer from yours, called multiple myeloma.
I hope you will get some great support from others with ET but I noticed your post and just wanted to say ‘hi’’ . I find this forum to be a very supportive community even though we represent quite a variety of blood cancers between us all.
Wishing you the very best with your treatment.
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I am so glad that you have posted @May14.
I am not surprised that you are not sure how you feel, I found it took me a long while to get my head round it all.
Yes, at least you have got a diagnosis and explanation.
Also it is scary not knowing how you will be affected by the medication and again that is very individual.
Great to meet you and perhaps check out the Blood Cancer UK website as well.
I find our forum very supportive and also if you would like to talk to the Blood Cancer UK support line on 0808 2080 888
Yep, onward and upwards and please keep posting as I would like to know more about you.
Look after yourself
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Hi Erica, thanks for your quick reply.
I’m stating my medication tomorrow so I will let you know how things go.
Speak soon x
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Hello, thanks for your reply. Yes it is essential thrombocytopenia that I have.
Everyone on the forum are so supportive and kind so I know I won’t be on this journey alone.
Wishing you all the best
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Good morning @May14
Welcome to the Forum and a huge Thank you for posting. It is a big step for some people to open up and say what they are really feeling, but once they do they realise they’re not alone. There are many others that have worries, concerns and questions around their diagnosis and potential treatments, it just takes one brave person to type it out and others come forward with reassurance and experiences of their own.
I hope you start to feel you can add more comments and questions yourself in the future, as soon enough you will be able to suggest tips and ideas for others about to start Hydroxycarbomide.
Worrying about treatment is normal, especially when it’s a medication you may never have heard of before or don’t have family/friends that take it. The list of side effects is anxiety provoking too, but the Consultant would not prescribe you the drug if they thought you may have reactions to it. The best advice is to be completely honest with your Doctor/Nurse when you next have an appointment, or before your appointment if you do feel unwell. Hydroxycarbomide is usually very well tolerated. It can cause some fatigue at first, and a few other minor issues, but generally it suits most people. The idea of it is to make you feel better not worse, so hopefully you’ll not notice you’re on it!
Please do feedback to us how you’re getting on, and if you need any support/advice, you can always call our Support-line.
Take care of yourself,
Kind regards, Heidi.
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Good morning Heidi,
Thanks for your support.
I am anxious about the medication but I have symptoms which I know won’t go away without the treatment.
It’s as you say the un known and reading the side effects are so scary.
I will keep you posted. I know I’m in good company and well supported by you all here. X
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Hello May14 glad you have found us here to meet others in similar situations - it’s helps doesn’t it! I am also someone with ET diagnosed 16 years ago so I had 13 years on Hydroxy (I have Peg interferon injections in the last few years) - I remember that time of diagnosis and like you I was started on Hydroxy immediately as I was high risk - I remember taking the first capsule and almost waiting to see what happened !! - but be reassured that taking them soon becomes very normal and just what you do to keep well. Doses vary greatly between patients and often change and get tweaked as it’s found what suits you and keeps the platelets lowered - so never worry when doses get upped a bit or lowered a bit that’s normal. I did find initially I got very tired, could sleep deeply with nothing waking me (after a lifetime of being abit of an insomniac!!) and also some mouth ulcers - but my experience was once my body adjusted to the meds this all lessened greatly - it is also good to know that you do need lots of hydration on Hydroxy - good sips of water all the time does really make a difference, it’s well worth doing. Do know too that many MPN patients take Hydroxy for many decades successfully - I was certainly always happy on it and I was always on high doses - only having to change eventually when it no longer was effective in keeping me platelets lowered. It’s worth knowing many happily take it for long periods. I know it’s hard to adjust to the thought you are taking a chemo medication - but I tried to think of it as being a friend helping me out to keep as well and safe as possible, even on the times when it didn’t feel so much a friend when some side effects kick a bit, but ultimately is there to assist with keeping the disease under control. Do let us know how you get on.
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Hello Jilly20, thank you for your words of advice and encouragement.
It’s great to hear from others who are much further ahead on the journey.
I will do as you did and consider my medication as a friend!
It is indeed there to help me. Thanks again for your reply x
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Hi I’m in exactly the same boat as you I was diagnosed in December 2022 and started taking Hydroxycarbamide last Tuesday so today it will have been a week on it.
How do I feel….exactly the same, but I had no symptoms of ET and it was only picked up due to my blood tests for Type 1 diabetes so maybe that is as expected. Also my platelets levels haven’t been so high. It’s between 570 -670.
I was fairly nervous before taking the first tablet as I have read here and other places all about the side effects but so far I haven’t experienced anything and have been able to carry on with my life as normal. There probably is a large mostly silent majority who are getting along fine with the treatment but who rarely post on forums as they have little to add and posts saying I’m all fine would probably generate very few replies.
Next month I am due another visit to the consultant who has been amazing for a check on where my levels are and to change the dosage as required, so fingers crossed things continue smoothly.
Hope this gives you some reassurance from someone who’s experiencing your journey at the same time.
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Hi Mills,
thanks for your reply. It’s good to hear from someone who is in the exact same place on this journey.
It’s the fear if the unknown isn’t it?
I too have to go back to see my consultant in 3 weeks to see how my bloods are doing.
My platelets are 720 at the moment.
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Hi @May14 . I am on the same journey as you having been diagnosed with ET JAK2 in October 2022. I am also classed as high risk due to my age. Everyone is different when it comes to the medication. Some will take it with little or no side effects and others will suffer. Unfortunately I am one of the latter. They put me on Hydroxycarbamide and aspirin at the start, but took me off the chemo after only two weeks. My reaction to it was intolerable. I do tend to react badly to many medications, so I am probably in the minority with the hydroxycarbamide, as lots of people seem to manage very well with it for long periods. It takes a while to get your head around the diagnosis and learn more about it, but the more you learn the easier it will become to accept it and manage the symptoms. It is what it is, and we are stuck with it. The fact that we have to be checked regularly is rather a nuisance, but a good thing, because the haematologist can pick up any changes to the blood and administer the necessary treatment for our good. I see mine again in three weeks time. My platelets were 623 last time and still rising. Know that you are not making this journey alone, as we are all here for you, and we all understand how you are feeling, so keep posting. Take care. Best wishes from Chris.
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Hi Chris, thanks for your reply. I’m so gladdened by the support I’ve had so far.
As you say things are different for everyone medication wise.
I still haven’t started my hydroxycarbamide yet!!! Just feel so nervous about what side effects I’ll get.
Maybe today will be the day I get my head around it.
I’ll keep you posted
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Sometimes the fear is far worse than the doing. Do it in your own time. You will know when you are ready to take it. It is all very new to you, so a big step to take. I felt the same at the start. Good luck with it, and I will be thinking of you.
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Hi @Chris1 It is tough when your side effects are intolerable.
Please let us know how you get on with your haematologist in 3 weeks time.
Look after and be kind to yourself
Hi @May14 perhaps it will take as long as it takes to get your head around it.
I can hear my son saying those words!!!
Yes, please keep us posted and really look after and be kind to yourself, the unknown I think is scary.
Hi @Erica. Yes will do. There will be a lot to discuss with him when I see him next. I saw the neurologist on Monday and she wants me to have a brain scan and to take meds to help with some of my neurological symptoms, but she has to liaise with my haematologist first, to make sure that they will be compatible with any medication that he might want to give me. The brain scan is being done to see if there are any minute blood clots caused by the cancer, causing any of the neurological symptoms. My case is very complex, as I have several chronic medical problems, and some of the symptoms overlap, making it difficult for the medics to know what to do to help me. The neurologist I saw this time was brilliant. She certainly knew her stuff and was very thorough. I hope you are feeling ok today. Take care. Best wishes from Chris.
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I have been taking hydroxy for ET for seven years now. No side effects at all. Sometimes feel a bit tired but I am 76 and always out and about. So fingers crossed for you! X
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Thank you for this re assurance. It means a lot.
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Hi @May14 I just wondered how you are doing?
Look after yourself