New to this

[mag123ben]

Have just found out I have blood cancer. Platlets were 750 , after taking hydroxy carbamide for just over a month they are 445. I have to up my tablets from 1 per day , to 2 Saturday and 2 Sunday and 1 rest of week. Apart from at the moment pain in my face and left leg. I'm not doing to bad. Have another month now to go before more blood tests. So will let you know how I get on.

[Mazcd Partner MPNVoice]

hello mag123ben, welcome to our forum. It can be quite a shock when you are diagnosed with a MPN and have to start taking medication for it. I hope that the information on our website is helping you mpnvoice.org.uk, there is lots on there about all 3 MPNs, the different medications used to treat them and lots of lifestyle information to help you manage your MPN and any symptoms you may be experiencing.

It can sound quite scary when you are told that you have blood cancer. MPNs were reclassified in 2008 by the World Health Organization (WHO), from disorders to neoplasms, because the word 'neoplasm' (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms), and because MPNs are characterized by uncontrolled cell growth they are classed as blood cancers. For new patients this can be alarming terminology, but it is important to remember that the symptoms and prognosis can vary widely and your specialist will advise you depending on your individual circumstances.

It might help you to read some of the real stories from people with MPNs who share their experiences, it can be very helpful to read how other people manage their MPN mpnvoice.org.uk/living-with...

We also have a series of vlogcasts which you can view on our YouTube channel, they are informal conversations with members of the MPN community - patients and healthcare professionals mpnvoice.org.uk/about-us/mp...

You will also find on our YouTube channel youtube.com/channel/UC-S_Ic... videos of virtual forums, on various topics, with presentations from haematology teams from across the UK.

We are all here for you, to help and support you.

Best wishes, Maz

[brightlys]

It can be really disconcerting to find out you have a blood cancer. When I was diagnosed, I was told these diseases are often "cancer with a small c, not a big C" and I often remind myself of that. Many of us die "with' these blood cancers, not "from" them.

One of the best pieces of advice I received when I was diagnosed was to try to get connected with an MPN Specialist. Not every hemotologist is an MPN specialist and because our diseases are so rare, it's good to find someone who is more familiar with current treatments and studies.

Do you know what mutation you have? JAK2, CALR, MPL? I have ET (Essential Thrombocythemia) and I'm CALR+. Which mutation we have can also impact our disease in different ways.

[mag123ben in reply to brightlys]

Thank you . I have JAK2. But the rest I think I know from my symptoms, if that makes sense. I itch , by shoulders and ears. My ears at night. I could willingly chop them of. My left leg gives me jip all day and night, lifting it up a step really is pain full. Speak to specialist and not really bothered, says speak to Dr. I don't have any one to talk to. Don't know where to ask questions and my family say not terminal. Where my brother's is. Makes me sound terrible if I say anything. I think I have MF. As that has more ticks than any other. Sorry if this sounds stupid.

[brightlys in reply to mag123ben]

That's really hard. I'm sorry your family isn't more supportive. I think the chronic part of these conditions confuses loved ones, because it's not like other cancer they may be more familiar with.

I will say, I've had a really good experience with these forums. A lot of knowledgeable and compassionate people are here.

It doesn't sound stupid. I'm sorry your leg is hurting and itching is definitely an MPN symptom that a lot of people struggle with. I had itching before I went on treatment, but lucky the HU and the Aspirin seem to have gotten it to settle down.

Did they diagnose you as MF or are you still in the process of diagnosis?

[mag123ben in reply to brightlys]

Still in process of diagnosis. Thought that was it, that I had JAK2. And on hydrochloride. Nobody to ask questions, and a few weeks ago my Dr. Said to stop hydrochloride and thought to myself no , would keep on them, as that was what the specialist was telling me to take them. Saw Dr about pain in leg .he just said x-ray just showed arthritis. thanks for messages.

[brightlys in reply to mag123ben]

I think it's a good plan to listen to the specialist about your meds. The average doctor isn't very familiar with these diseases. Being in the process of diagnosis is stressful. I'm wishing you get answers soon.

[JustKeepSw1mming]

Hi Mag123ben,

Welcome to the forum and sorry to hear about your troubles. I also have a JAK2 mutation and ET. I was diagnosed 12 years ago and I am on HU.

It can be overwhelming, especially if you feel that your doctor doesn't know much about it. Founding a good MPN specialist is key. This site has a directory that shows some of them.

This forum is a great place, full of knowledgeable and incredible, supportive people. It has helped me a lot just talking about what I have here.

You are not alone in this.

Take care