Hi everyone, hope you’re doing well. I was first diagnosed with Essential thrombocythemia (ET) Jak 2 in 2023, up until September this year I’ve been taking aspirin only, in June this year my consultant said my platelets had risen to over a million, in September I was prescribed hydroxycarbamide 500mg daily, last week I went to see same consultant and my platelets haven’t decreased and now my red cells have also shot up drastically, so I’ve been put on 1000mg daily, I’ve been having ulcers in mouth, numbness in fingers and large cyst on arm, nurse said to stop HU for a while, but I’m scared of heart attack and stroke, my next appointment isn’t until March 5th, this feels a long way off considering I’ve had problems on HU and now I’m on double dosage plus recent red blood cell high count, I feel I shouldn’t be waiting this long?
Hi StevenP, welcome to the forum. I’m sorry to here you are having a tough time at the moment. One of the specialist nurses on here may be able to advise you on what to do regarding appointments. However, if I were you I wouldn’t be happy either. I would be asking for an earlier appointment or phone consultation. I have Polycythaemia vera (PV) not Essential thrombocythemia (ET) but when my medicine changes I have monthly appointments until my haematologist is satisfied everything is in control. I’m going through this at the moment. If I have issues I can contact them via the admin service and the consultant will call me at home. (I live in Spain and use the local equivalent of the NHS - which may account for the difference). If it’s any help at one stage I was on 1500mg a day of Hydroxyurea so your dosage may not be as worrying as you think, though I do have a different condition.
The resources on here are very good and if you trawl through some of the old threads you may find people who’ve had similar issues to you and there may be some reassurance/suggestions there.
Take care
Pedro
Hello @StevenP, welcome to the Forum and thank you for sharing what’s happening - I can hear the worry in your post, and having your next appointment not until March when things feel quite unsettled must add to the anxiety.
This is definitely something where our fab Support Line nurses could help. They can talk through the situation with you, help you understand what questions to ask your team, and help you understand the reasoning behind certain decisions your team makes. You can call them on 0808 2080 888 or email support@bloodcancer.org.uk.
In the meantime, and as @Pedro helpfully mentioned, you may find some helpful information in similar threads around the Forum. Have you noticed the ‘Related’ section at the bottom of this page? It automatically suggests similar conversations based on what you’re reading/posting, and should make it easier to find related threads.
Take care,
Ceri - Blood Cancer UK Support Services
Hello @StevenP
Thank you for your post, we are so sorry to hear about your diagnosis of Essential thrombocythemia (ET) and that you are going through an understandably worrying time with your medication & side effects.
I can see that both Ceri and Pedro have given great advice, we would just like to add that ideally we would advise getting in touch with your haematology team/ CNS (clinical nurse specialist) as soon as you can to let them know how you are feeling, reiterate your concerns and about the side effects you are experiencing. You are correct that this seems a long time to wait, especially with how you are feeling.
I’m unsure if your hospital has an acute triage line you may be able to phone to let them know about these side effects as you may need assessment for these.
If you would like to talk through any of this with one of our support nurses, please do get in touch on 0808 2080 888.
Take care,
Emma (Support services nurse)
Hello there @StevenP, welcome to the forum. I’m sorry to read of your concerns around living with Essential thrombocythemia (ET) and those symptoms you’ve noted since changing medicine dosages. That would stress me out, so it’s great you’re seeking some ideas about what to do.
While I live with Polycythaemia vera (PV) rather than Essential thrombocythemia (ET), you likely know that they’re related Myeloproliferative neoplasms (MPN) and often have similar symptoms, treatments, and risks. I also take aspirin and hydroxyurea like you and would be concerned about ulcers, cysts and numbness.
The aspirin is meant to lower our risks of clotting as it thins our blood and helps put less pressure on our hearts, or so I’ve been told. The hydroxyurea will lower our risks of strokes because it slows down the overproduction of blood cells the Myeloproliferative neoplasms (MPN) cause in our bodies. Maybe you’d like to read the Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
Already you’ve had really helpful responses from @Pedro, @Ceri_BloodCancerUK and @Emma_BloodCancerUK and I’d add that I would not wait another few months for an appointment if I were experiencing those symptoms, please do contact your specialist. I was told by my haematologist not to just stop taking hydroxyurea or to miss doses, so perhaps run what your nurse said past your consultant. I’d also add that each time my dose changed I went through a period of adaptation, usually waves of horrible fatigue and brain fog which settled down after a few weeks to months. Perhaps those nasty ulcers are how your body reacts?
You don’t need to live with those side effects @StevenP, do please let us know how it goes getting them checked out.
Hi @StevenP I am suffering with Polycythaemea Vera JAK-2 (Polycythaemia vera (PV)) since 2018. am on Hydroxycarbamide and Clopidogrel for thinning my blood. Occasionally I too will go longer than normal between appointments, as i am now. Being in the UK and under the care of the NHS, after an appointment via phone or hospital appointment, I will receive a “Clinic” letter from my local hospital Haematology department quoting everything we discussed with my blood readings. This letter will also give me the phone number of the Appointment Booking Team that I can contact (usually by leaving a message on their answerphone !!! - I hate answerphones !!!) but it works, within a few days, I normally receive my next appointment letter. Good luck, take care, but never let it go on too long. You should also have an allocated CNS nurse !
Hi Thank you, I have a nurse which I can contact directly, they have given me a number to an Myeloproliferative neoplasms (MPN) support group who meet at the hospital once a week, which I will want to attend to gain further understanding.
Thank you, yes I was worried when the nurse suggested stopping HU, especially days after the consultant said my red blood cells had shot up! He said my blood is very thick and put me straight to 1000mg from previously being on 500mg, I also get very fatigued, I find eating well and moderate exercise helps, but still have to rest frequently, I tried a venesection but went into hypertension, awful feeling that was.
Hi, thank you, I have a direct number where I can raise concerns with a nurse, they have passed a number for me to contact an Myeloproliferative neoplasms (MPN) support group who meet at the hospital.
Thank you, I have a number that I can text and do get a reply from a nurse, I’m seeing if taking HU in the mornings instead of evenings will help, my last count hadn’t gone down being on 500mg and red cell count shot up for first time since first diagnosis, hopefully side effects will settle so I can up my dosage.
Hi, thank you for information, I was hoping for monthly checks, as in the last 3 months since my last check up, my red blood counts have gone from normal to very high! I feel having these sudden changes along with double dosage of HU, to wait 3 months again is risky.
Thank you, it’s good they give you the information discussed, this is what I was for myself, hoping they’d share their results with me, I only get a letter with appointment details with no information attached to hospital findings and no mention of what my condition is, my recent consultation at the hospital mentioned highly elevated red blood cells and HU being ineffective, but haven’t a clue on the actual readings of my platelets or given any advice as to why my red blood cell count has all of a sudden jumped high, written or verbal, I feel they know everything I want to know, and I know nothing.