Continuing the discussion from I have been told I will be moving to Hydroxycarbamide:
Just been diagnosed with Essential thrombocythemia ('ET')&abput to start Hydroxycarbamide in 2 weeks time-platelets were 580-I’m 76 year old female.I’ve been using nicotine patches/can I keep using them while on this medication?Any effect on hair loss?Can still do gym sessions(not strenuous)?Thanks
Hi @Lizzie1
I think your Haematology Team are best to advise you on these questions.
That said the lovely Blood Cancer Nurses @BloodCancerUK-SupportTeam may also be able to advise.
Take care
Hello there @Lizzie1, welcome to the forum.
I’m so sorry to read of that Essential thrombocythemia ('ET') diagnosis, but you’re not alone with it here. There are many forum members who live with Essential thrombocythemia ('ET'). It’s also closely related to the Polycythaemia vera ('PV') I was diagnosed with, and both are types of Myeloproliferative neoplasms ('MPN'). Perhaps you’d like to read the great Blood Cancer UK information about Essential thrombocythemia ('ET'), which can be useful to share with others too: Essential thrombocythaemia | Blood Cancer UK
We forum members can’t offer medical advice, and I couldn’t find any other threads with forum members discussing nicotine. Personally I’d like to say well done for using nicotine patches instead of smoking. Smoking as you likely know can worsen the likelihood of clotting, which is our main risk with Myeloproliferative neoplasms ('MPN'): Looking after yourself with PV | Blood Cancer UK
I’d agree with @DuncanB that your specialist knows you best and will know which medicines interact with hydroxycabamide. I take hydroxyurea and it seems to mix pretty well with other medicines so far, but do check with a specialist.
Personally I’ve not noticed my hair thin after taking daily hydroxyurea for 3 years, but it affects us differently. I know of another forum member whose hair did thin taking hydroxyurea, but he was able to change to a different medicine.
Unfortunately, hydroxyurea can very commonly affect how thick our hair is according to this information from Macmillan: Hydroxycarbamide | Macmillan Cancer Support
Sounds great that you do gym sessions, I’ve heard keeping fit is one of the best things we can do with these Myeloproliferative neoplasms ('MPN'), keeping our blood pumping round! I love a good hike.
Keep us posted about how you get on @Lizzie1 and what your doctor says about the nicotine patches, I’d be interested to learn.
Hi @Lizzie1 I was diagnosed with Essential thrombocythemia ('ET') December 2025, platelets above 1300. For me I’ve had very few symptoms that have impacted how I live. The first couple of months on hydroxy carbamide made me very tired. Once I’d gotten over that it’s been pretty okay. I’m now on 11 pills per week and platelets down below 550. I do walk to keep active, I find it does help to get out even if I feel tired. Maybe I’ve been lucky in having so few effects from either Essential thrombocythemia ('ET') or medication, hopefully you will too.
Thanks for this @klf1956, it’s really helpful and reassuring to read of others having similar side effects from treatment—although of course I’m sure we’d never wish any of this on anyone! As I had no symptoms of Polycythaemia vera ('PV') before diagnosis I could tell how the hydroxyurea affected me, namely disabling fatigue.
My haematologist says that as my Polycythaemia vera ('PV') was at such an early stage it likely had yet to cause the more typical symptoms and I was fortunate to avoid super-high platelets or other blood cells.
So I’d say that it’s really great that your platelets have come down to near normal levels, and relatively quickly. That thinner blood should also cause less strain around your body from what my doctor tells me about mine. Exercise is also meant to be really helpful so well done with your walking, it feels great to get the blood safely pumping, doesn’t it?!
Keep us posted @klf1956 and I’ll look forward to reading more of your experiences of living with Essential thrombocythemia ('ET').
Dear @Lizzie1,
Welcome to the forum, I am sorry to read of your Essential thrombocythemia ('ET') diagnosis, I imagine this came as a shock? It is great that you have found our forum and I hope you find it a safe space to share how you are doing.
You have some great replies here and some excellent resources already shared. I just popped on to say it would be best to check about the nicotine patches and any interactions with your hydroxycarbamide. You can check this with your haematology team or ask a pharmacist who will be able to advise.
Hydroxycarbamide shouldn’t make your hair fall out but like some people have mentioned it may cause thinning. If possible try to reduce the amount you handle your hair, and being gentle with the products you use and brushing. Although hopefully you wont have to much of a change.
With regards to the gym, its great to keep active if you can, we have some pages here on this - Blood cancer and keeping active | Blood Cancer UK. It is best to check with your team if there is anything you should avoid just to be safe.
If we can help talk anything else through you are welcome to call us on 0808 2080 888.
Best Wishes,
Heidi J (Support Services Nurse)