Is ET a blood cancer?

[SOD2]

My doctors say it's not but i've read that the World Health Organization classes it as one... I have ET with germline MPL mutation. I was born with it, as was my mom. We've both had TIAs. My mom was diagnosed after me. I am about to start Hydroxycarbamide in 2 weeks and am currently on 75mg Aspirin. I am on ESA but tempted to claim PIP too however I worry about misleading people with my diagnosis considering I will essentially be having chemotherapy.

[john0084]

I be interested how you get on as I don't claim at the moment and just diagnosed with primary polycythamia rubes Vera. Just started 500mg Thyroux every other day

[SOD2 in reply to john0084]

I will keep updating everything. There seems to be a lot of controversy over the "cancer" classification. It seems likely to me that it is but very very slow progressing. It would be nice to have a clear diagnosis, I can handle the truth. It's the not knowing that gets to me. I have also gone into the 100,000 genome study which will hopefully tell me more at the end of the year. You should definitely look into claiming if you have symptoms and take chemotherapy medication.

[mhos61 in reply to SOD2]

Yes, it is a cancer.

The WHO reclassified MPNs as a cancer in 2008. Prior, to this they were classed as blood disorders.

I have ET, and the Consultant Haematologists letter to my GP stated that ET was ‘deemed a cancer of the bone marrow.’

Mary x

[SOD2 in reply to mhos61]

Thank you Mary x

[jillydabrat in reply to mhos61]

Yes, people are calling MPNs blood cancers but then I read that its actually bone marrow cancer which makes more sense

[Jennytheb in reply to john0084]

Hi at my initial diagnosis it was explained that the spleen keeps over producing red blood cells and this is why I was advised (Jak2 ET) to start Hydroxy. In theory this would 2gum up the spleen" so it would not be able to produce so many. So in my mind the over producing of any of cell is a type of cancer? Only my thoughts may be wrong. Were any others of you told about the spleen thing? I wonder if eventually the spleen may be totally blocked, would this lead to complications then? Always so many questions aren't there.

Take care all. Jenny

[Hidden]

I have a booklet produced by Leukaemia and Lymphoma research on MPN's (UK) and on the front cover it says 'beating blood cancers'. Perhaps you could write to them and request one of these booklets? It has a lot of information inside. Hope this helps.

[SOD2 in reply to Hidden]

Good idea. I will keep that in mind, thank you! 🤗

[Mazcd Partner MPNVoice in reply to SOD2]

We have inforamtion booklets as well, all about MPNs and the different medications used to treat them, they are specifically for MPNs not any other blood cancer/disease. If you would like any you can either download them from our website mpnvoice.org.uk/about-mpns/...

or you can email me at [e-mail] with your postal address and I can send them to you. Maz

[SOD2 in reply to Mazcd]

Thanks maz. That would be greatly appreciated. I shall email you in the morning.

[SOD2 in reply to Mazcd]

Hi Maz, I emailed you regarding this. Did you receive it?

[Ebot]

Yes it is. And this is important (in the U.K. at least) because it enables you, for example, to make a claim on your critical illness cover, get free NHS prescriptions and be protected under disability discrimination legislation. However, as others have pointed out it is a chronic and very slow growing form of cancer. Most people die of other things - even old age! The critical thing is that you have a diagnosis and are monitored and managed by a specialist MPN haematological team. That is the best predictor of a positive outcome. Wishing you and your family well.

[SOD2 in reply to Ebot]

Thank you for your reply Ebot.

[Ebot]

Also check out the MPN Voice website set up by the team at Guy’s Hospital in London who also monitor this Forum. It’s very informative and will clarify the blood cancer / WHO definition for you. They also produce a series of very helpful leaflets that you can download.

[Hidden]

I think your doctors need to re-educate themselves in this area of medicine, it changed to a cancer about 9 years ago.

Re claiming of PIP it is not something you get just because you have an illness or take a certain type of capsule that is a chemo drug it is how your illness affects your daily life eg walking, dressing, eating, washing etc.

[SOD2 in reply to Hidden]

Yes I realise it is harder to get pip. I am thinking about it at the moment due to my increased fatigue, anxiety and depression, headaches etc which I imagine may become more severe once on hydroxycarbamide. I was hoping to get back into work this year but I am tired all of the time and just have no energy.

[jillydabrat in reply to SOD2]

Hi, yes Yorkie1 is spot on regarding PIP. I have PV and osteoporosis, which I am sure has been exacerbated by my PV. I get the higher rate of PIP because of my mobility problems. I have to have an electric wheelchair if I have to go shopping because it feels like a hot knife is slicing through my spine. During the summer I use my mobility scooter to go into town. 4 weeks ago I banged my knee on the bed base. Since then I haven’t been able to weight bear on my knee. I have been terrified of going to A and E at our local hospital so my GP referred me to a nearby community health centre and I will be getting it X-rayed on Thursday.

When you complete your PIP application you have to really think about how your condition affects your life. There is a section where you have to tick the box if you have cancer and if you tick yes you have to get your consultant to agree to the statement that your condition will affect your ability to work. He/she will have to date and sign it. Good luck with your application.

[Daisy-May in reply to SOD2]

I get pip have done for quite a few years now for anxiety and depression it's how you fill the forms in and how if effects your every day life! It used to be called DLA then changed to pip so I had to reapply got turned down took it to a tribunal and won! Just go for it and apply 👍

[Ovingite]

Hi,

You will probably find that this is an emotive issue on this site - I did when I raised it earlier! Mary was spot on when she said that the WHO have categorised all MPNs as cancers (see bloodwise.org.uk/info-suppo..., however that information doesn't seem to have filtered through to some of our healthcare professionals and the NHS / NICE don't appear to have a view on it either way.

Cancer is defined as the uncontrolled division of abnormal cells in a part of the body. ET, and other MPNs, are caused by the uncontrolled division of blood cells. This is generally controlled by drugs such as hydroxycarbamide (a member of the chemotherapy group) which reduces the proliferation of 'unwanted' blood cells. The main differences between MPNs and other cancers are that they are chronic rather than acute, and they are not tumour forming. Most areas that specialise in MPNs (such as MPN Voice and its sister US organisation Patient Power and many research centres) accept that MPNs are cancers. However there is still a lack of clarity within the medical profession in general and Cancer Research UK say that "Myeloproliferative neoplasm is a term that doctors use both for cancers (malignant neoplasms) and non cancerous tumours (benign neoplasms). There is some debate about whether these conditions should be regarded as cancers or not."

So you can see why there is so much confusion on this topic. My simple, non-medical assessment is that if it behaves like a cancer (proliferation) and is treated like a cancer (chemo), then cancer it is!

Take care

John

[Mazcd Partner MPNVoice]

mpnvoice.org.uk/about-mpns/...

[Hidden]

Unless you are on income-related ESA, you should apply for a medical exemption card on the basis of having treatment for cancer (aspirin at the moment and soon to be taking hydroxy). This will get you free prescriptions for all medications and not just MPN related medications.

[Wyebird]

Good luck with applying for pips. I’m warning you now though it’s very very difficult to get.