I’ll be 79 in a few weeks time (I hope!!) and have been on hydroxycarbamide for CALR positive ET for 10 years. No side effects apart from brittle nails, and having inherited my grandfather’s hair, don’t even show much age related male pattern baldness! If my prostate had not gone rogue, I would have expected to be almost completely fit. Obviously can’t promise you anything, but just don’t worry; the chances are you’ll be fine.
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I was concerned about my hair too - it has thinned a little but only a little and I’m the only one to notice. As I’m 72 it could be age related. I started Hydroxycarbamide 2 years ago and take 12 tablets a week with no side effects. All my symptoms have improved and generally I feel so much better
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Thank you ,thank you. Please keep the comments coming. You are definitely helping!!!
Sammy x
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Hi @Jacqui great to hear from you, how are you doing?
Take lots of care
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Hi Sammy , i am newly diagnosed with Essential thrombocythemia (ET) and have been advised by the consultant that maybe i should start on hydroxycarbamide . My platelets were over 1000 . He explained all possible side effects and , when i asked about my hair , he said it would be unaffected. I decided to go ahead and i have had 17 days on it. My platelets have already gone down to 700 and i feel less tired . I have not noticed any side effects. I know it is early days but if i were you I’d try them . The blurb inside always points out all scenarios and even with Paracetamol the blurb can seem scary !
Take care and good luck x
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Hello there @Crispy, welcome to the forum. I’m sorry to read of your diagnosis with Essential thrombocythemia (ET) but you’ve found just the right place as there are many folks here living with Myeloproliferative neoplasms (MPN) such as yours.
I’m glad to hear that your treatment is helping to bring down your platelets and tiredness, and no hair loss! Great stuff. I also take hydroxyurea, for Polycythaemia vera (PV), and haven’t noticed hair loss, although it was the hydroxyurea that caused my rather disabling fatigue rather than abated it. Thankfully that’s faded now.
Perhaps you’d like to read the Blood Cancer UK information on Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
And our family of blood cancers, Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I look forward to reading more of how you’re getting on @Crispy. Do look around the forum as you’ll find many others living well with Essential thrombocythemia (ET) and related Myeloproliferative neoplasms (MPN).
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Hi @Crispy a great big welcome to our forum, it is good to have you in our forum family.
@Duncan has given you a great welcome and response.
I was diagnosed at this time of year and felt in a weird bubble with everyone celebrating around me.
All I can add is the Blood Cancer UK support line is there for you on 0808 2080 888 and we will be about on here over the holiday period.
Yes, most medications cover every eventualities!!!
Be kind to yourself and please do keep posting.
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Hi Crispy,
Firstly sorry to hear about your recent diagnosis. Thank you so very much though for sharing your experience with the medication so far. It is great to hear that your platelets have already decreased and that you have no horrid side effects.
I must admit I haven’t been feeling too great recently. I keep getting tiny blood clots in my fingers and my feet are burning and bruising so I may need to consider starting soon!
Please could I ask you to report back again in a few months to share how things are going? I would really appreciate it.
Thanks again for your sharing your experience. It is very kind. Have a wonderful Christmas xx
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Hi @sammy great to hear from you again, but sorry to hear that you have not been feeling too great.
Perhaps a chat with your nurse or medical team is in order, so they know what, your symptom, fears questions and practicalities are for peace of mind if nothing else.
Please do let us know how you get on and really look after yourself
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Hello there @Sammy, just caught up with your comments about whether to start hydroxyurea or not over the last year or so. It sounds like you haven’t taken hydroxyurea but are continuing to have blood clots?
I wonder what treatments other than hydroxyurea your specialists have suggested? I’m sure you know that clotting events can be very risky for those of us with Myeloproliferative neoplasms (MPN). I was told they’re our main risk. I’d hate to think you’re suffering from frequent clots when there are tried and tested medicines available.
Just to add my experience to this great thread of fellow Myeloproliferative neoplasms (MPN) survivors, I also take daily hydroxyurea and know it’s a form of chemotherapy that is considered mild. I haven’t noticed thinning hair, but my skin is now photosensitive and can feel fizzy in strong sunlight unless I’ve used high SPF sun lotion. It’s easy to cover up with sun-protective clothing like long-sleeved tops and hats.
My haematologist told me that young people with sickle cell disease have taken hydroxyurea as their main treatment for decades and yet don’t have a greater incidence of developing cancers, which gives me confidence that I won’t either.
Anyway, do let us know how it goes and what helps reduce that horrible-sounding clotting.
Hi Duncan,
Thanks very much for writing in to me. I have also tried Interferon but it made me very depressed, I kept getting infections and it did not reduce my platelets so the Hydroxy has been my only next choice. The micro-clots in my hands and feet are quite a new thing. I will defo consider starting a new treatment but am still worried about my hair and I love sitting in the sun. I suppose eventually I won’t have a choice!
Thanks again for your time. Have a great Christmas and all the best for 2025!
Sam x
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I have been on 1500 mg of Hydroxycarbamine now for 6 months, my syptoms are better since being on this medication. Yes I get headaches occasionally but overall I feel better.
I stiil have my hair. Good luck
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Hello @Duncan . Thank you for yout welcome . I spoke too soon and now have nausea and vomitting and feel tired again . I assume it’s the hydroxycarbamide kicking in . Anyone else suffer from this and advice . By the way I’m 78 so no youngster !
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Hi @Crispy personally I would say talk to your specialist nurse or medical team about the symptoms you are now experiencing and I hope others will be able to share their experiences too.
Look after and be very kind to yourself and please do let us know how you get on
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It’s been good to read the above posts. I start Hydroxycarbamide on Tuesday 31st Dec with 500mg a day. I know side effects are individual but it’s good to hear that most have had none.
All the best and take care
Alex
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Hi@Erica . Thank you for your welcome and advice .i shall phone haematology tomorrow. Also i have a blood test in the morning .
It’s all a bit daunting and frightening as apparently my platelets have been raised for some years although i didn’t have symptoms ( i take Aspirin anhow ) .
I hope you are keeping well
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Oh @Crispy, I’m sorry to read about those symptoms. Like dear @Erica suggests, do mention them to your specialists. There are medicines we can take to help with nausea and vomiting. Did your doctors suggest taking the hydroxyurea with/after food? I take mine after a snack or dinner so they’re not digested on an empty stomach. Hope your blood test goes well.
Hello again @Adw265, glad to hear your treatment with hydroxyurea is moving ahead. I’ll keep my fingers crossed you have an easy time adapting to it 
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Hi Crispy,
What a shame you have now encountered miserable side effects. Thanks for sharing and for being so honest. It is sad to hear this but hopefully things will settle. I hope you managed to have a nice Christmas? Please keep in touch!
Erica, thanks as always for your kind words of concern and advice. I fear to mention my poor health to my consultant as she is desperate to start me on the Hydroxy and I still want to delay it for now. I know she has my best interests at heart but I cannot face my already thinning hair (partially from age and partially from blood pressure meds) getting any thinner. I’m sure most 53 year old women would understand this. I work at a school over lunch time too, which means being in the midday sun every day for 2 hours. I cannot wear sun cream as it makes me perspire uncomfortably. I hope I can manage my symptoms until at least 60 and then I will reconsider.
Take care everyone!
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Hi @Sammy I was diagnosed at 53 yrs old, I am now 74 yrs old.
My hair is really thin now, I think it was always fine.
I have found that wearing a sunhat is more of the normal now for all ages.
Trust me it is better than skin cancer which I have had twice on the top of my head, the first op included a skin graft from my leg.
Perhaps it is only fair on your consultant to be really honest with her so she can advise you honestly of your options.
I wonder if your pharmacist could help you with sun screens that might not make you.
perspire as much.
However it is your right to decide what you want to do with your health and treatment.
Really look after yourself and please do keep posting
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Hi @Sammy, @Crispy, dear @Erica, one of our overseas correspondents @Duncan and anyone else that I have missed out there!
I have now been on Hydroxycarbamide for nearly 4 weeks, having been on Pegasys for a little over 6 +1/2 years, for my Essential thrombocythemia (ET), diagnosed back in March 2018.
Since the change over, I have noticed a few changes, mostly (I’m sorry to say!) negative ones although, on the positive side, my headaches have reduced in frequency, if not in magnitude and the diarrhoea has “solidified” slightly (apologies if any one is eating!). On the flip side, I have lost all appetite, and feel very much more emotional than ever before, the tremors/shakes seem to be more pronounced. And, worst of all, my fatigue levels have deepened so very much. All of this will be discussed on Friday when I have my 3rd appointment in 4 weeks with the consultant.
Still, life goes on and I am, just about, managing to keep working full time, but this is becoming more trying, tiring and difficult.
Meantime, please all stay safe, take care, be kind to yourselves, keep smiling and speak to (with? at?) in 2025.
Best wishes,
Jimbo165
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