Hi All,
My name is Darren. Not very good at this so please be gentle.
December 24th i was diagnosed with Essential thrombocythaemia (Essential thrombocythemia (ET)) with the JAK2 mutation.
How i got here was due to me booking at appointment with my GP in September as i had been itching incessantly for weeks despite changing washing detergent and changing body wash, thinking i had just become sensitive to it. After several blood test and then seeing the Hematology Consultant in December i was given the above news.
The advice i need, if anyone is able to give, is how do i ease the itching. I am still waiting on the letter from the consultant to my GP as he said this would provide information but this is still outstanding, i assume due to the Christmas new year gap, but it is driving to the point of madness, i don’t go out as i think people are staring at me cause i am itching like a dog with fleas. I have tried self medicating 180mg anti histamine but this does not help. So am willing to try anything right now.
Sorry for the ramble
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Hello @DazzaRN and welcome to this forum. I hope you find it a helpful and supportive place. I really feel for you. I have a different blood cancer to you, namely myelofibrosis but it is closely related to Essential thrombocythemia (ET). They are classed as Myeloproliferative neoplasms (MPN). However I have experienced itching from time to time and I understand how debilitating it can be. At the top of this page you will find a box that says ‘search the forum’ and if you type in ‘itching’ you should find a list of other posts that have been made on this subject. Unfortunately it is an issue experienced by many others. I hope that what they have shared will be helpful to you. There is another charity called Myeloproliferative neoplasms (MPN) Voice that deals specifically with Myeloproliferative neoplasms (MPN)’s and you might find they have advice on this too. I wish you well. It is very early days for you and I guess you are trying to come to terms with it all. Thinking of you. Warm wishes Willow
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Dear @DazzaRN,
Welcome to the forum.
I am sorry to read about your recent diagnosis and your battle with debilitating itching.
As Willow has mentioned this is something we hear about often and I agree if you search for itching on the forum you will find lots of helpful advice from people with lived experience.
I wanted to add in here our pages on itching - Itching | Blood Cancer UK, there are lots of tips on these pages including self help but also recommendations for your healthcare team.
Can I ask if your consultant made any recommendations about your itching? Also are they considering any treatment for your Essential thrombocythemia (ET)?
We would be very happy to talk things through with you, our number is 0808 2080 888.
Take Care,
Heidi J (Support Service Nurse)
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Thanks for the advice @Willow i will get searching, may even take my mind off the itching lol
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Hi @Heidi-J-BloodCancerUK
I certainly will be searching the forum for tips on itching. Have to say the consultant did not give much info on the itching, he mentioned some medication that may help but said this would be in a letter that was going to my GP, but nothing as yet.
As for treatment at this stage he is not thinking of treatment, will keep reviewing as I am suffering a lot of night sweats also and my platelet count was 880 and not over a thousand, at least that’s what I think he said, I kinda zoned out after I was give my diagnosis so will likely have lots of questions by the time I see him next time.
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Hola, solo tener un recuento alto de plaquetas puede ser algún tipo de leucemia? Estoy muy preocupada