Advice Please

Recent diagnosis
1

Hello

New member here.

I am sure some of the issues I am unclear about are covered here on the forum…….however

I have just been told I have Myeloproliferative Neoplasm. I am awaiting my medication prescription. To complicate matters I also have remitting and relapsing MS but not on any medication at present as stable.

I have been sent booklets on Hydroxycarbamide and Essential thrombocythemia (ET). Assume Hydroxycarbamide is the medication I will be on, What is Essential thrombocythemia (ET) ? Another name for Myeloproliferative neoplasms (MPN) ?

I was diagnosed after several blood tests noted my white blood cell’s and platelets were rising. I literally ache all over like I have been hit by a bus. When I mentioned this to the consultant he was quite dismissive and said it could be caused by the Myeloproliferative neoplasms (MPN) but may not be. Anyone any experience of this ? Will the medication stop all these aches and pains ? I was a fairly fit 60 year old going to the gym 3 or 4 times a week and hope to get back to that.

I was a bit surprised when diagnosed so didn’t perhaps ask all the questions I should have to be honest

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2

Hello @RussellF

Welcome to the forum, I’m confident you will find it a great place to ask questions and take comfort.

I’m so sorry to learn of your circumstance, I’m sure you have lots of questions regarding this and to that end I have copied in our @BloodCancerUK_Nurses.

There are lots of different posts on the forum, and a good number of them relate to your condition. By typing Myeloproliferative Neoplasm into the search engine at the top it will allow you to go straight to any posts regarding this.

I noted one post refeed to MPN awareness day, and again in confident there lots of other posts not dissimilar that may be a good source of information and somewhere you may choose to engage with others who have the condition.

I can relate to some of the things you refer to, as although I have a different condition (I have Chronic lymphocytic leukaemia (CLL)), it does, I’ve learnt, give many people aches especially in the legs, and beyond this you and I are very similar age and I do go the the gym three times a week.

I hope you find visiting the forum supportive and I hope you take the opportunity to let us know how you get on

Take good care

Mike.

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Hello @RussellF

Welcome to our forum and thank you for your post.

We are so sorry to hear about your diagnosis of Essential thrombocythemia (ET) we can imagine this has come as a shock and can be an overwhelming time, we hope that you are feeling okay.

Should you ever wish to talk things through, please do get in touch on our support line on 0808 2080 888 to speak with one of our nurses.

Myeloproliferative neoplasms (MPN) is the ‘umbrella’ term for three different conditions, this includes myelofibrosis (MF), Essential thrombocythemia (ET) & Polycythaemia vera (PV). You can find more about this on our page What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK and on Essential thrombocythaemia | Blood Cancer UK which has a section on what Essential thrombocythemia (ET) is, living well with this, symptoms of this and treatment options.

Essential thrombocythemia (ET) is caused when your body starts making too many blood cells called platelets. Platelets help your blood to clot which is important for healing, for example if you have a cut or bruise.

This means that in Essential thrombocythemia (ET) your blood may clot too easily. This mean there is an increased risk of heart attack or stroke due to blood clots and Essential thrombocythemia (ET) itself can cause a range of other symptoms, therefore the treatments given in Essential thrombocythemia (ET) aim to reduce these risks and manage symptoms.

Hydroxycarbamide works by reducing the production of all blood cells as it slows down the cell division in the bone marrow - this includes platelet count and so is useful in patients with Essential thrombocythemia (ET). Further information about this drug can be found on Myeloproliferative neoplasms (MPN) voice’s page - Hydroxycarbamide – MPN Voice

Most people tolerate this medication very well, but any worries or concerns do inform your team/ clinical nurse specialist.

Feeling tired/fatigued is a listed symptom of Essential thrombocythemia (ET) and can be frustrating. It’s good that you have mentioned feeling achy to your team, however this should not be detrimental to your daily activities, so please keep them updated on how you are doing so that they can support you as best they can.

Take care & let us know how you are doing,

Emma (support services nurse)

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