PV classification

[RosemaryHarper]

Does anyone know when World Health Organisation classified PV as cancer - BUPA are still saying it is not!

[Aime]

Hi Rosemary, have a look on the MPN Voice website mpnvoice.org.uk/living with. It is definitely classed as a blood cancer but that should give you a link to send to bupa.

Kindest regards Aime xx😺😺

[Aime]

Sorry there should be a hyphen between living-with.

[mhos61]

rarediseases.org/rare-disea...

The above link refers to the 2008 WHO reclassification of MPDs to MPNs. Hope it helps!

[RosemaryHarper]

Thank you for your replies.

[RobPV]

I'm pretty sure it was at least 10 years ago. My GP and also my haematologist are yet to catch on to it.

[Chicagopv]

US government considers it a cancer: cancer.gov/publications/dic...

[BonnieJ in reply to Chicagopv]

If you read that link closely, it calls PV a DISEASE, not a cancer. Many oncologists here in the USA call PV and ET blood diseases or blood disorders, despite the World Health Orginization’s classifying them as cancers.

I see my oncologist later this month and I am going to ask him, “if this is not a cancer, then why am I seeing you? The name of this place is FL Cancer Specialists!”

[Chicagopv in reply to BonnieJ]

But the overall link is from the National Cancer Institute.

[Alex9621 in reply to BonnieJ]

Cant believe that their is someone else in the area with PV. I have PV and go to FL Cancer Specialists to. As far as PV being classified as a Cancer I wish everyone would get on board with this. It's already hard enough to deal with this disease let alone questioning cancer vs ?

[BonnieJ in reply to Alex9621]

Hi Alex! I have ET, not PV. But glad to know there is someone else out there in Florida who has some understanding of this set of MPN disorders. I am in Fort Myers. Which office do you go to?

[Alex9621 in reply to BonnieJ]

I go to the Davenport office.

[tracey13 in reply to BonnieJ]

They are cancers as mpd they used to be called myleprolific disorders now they are classified as MPN myeloproliferative neuroplasms as neuroplasms means new growth .

Tracey

[MPort]

Hi Rosemary,

I have PV since 05 and early in my treatment journey I asked Bupa for referral cover to see a haematologist on their list. They refused on the grounds that my request was for a chronic condition and their small print allowed them to deny it. Some time later I reapplied and described it as new development, I can't remember the words I used. This time I was successful. The issue of whether it was cancer or not was not discussed. Chronic ie long standing was the stumbling block. This may have changed now, I haven't needed to ask in last 8 years.

Good luck

Mairead

[RosemaryHarper in reply to MPort]

It took me a year of asking, for BUPA to agree to funding me for private treatment and access to Ruxolitinib (I was intolerant to Hydroxycarbamide). I have been paying a monthly subscription to BUPA for over 40 years so I was really upset about this! BUPA stated that PV was not cancer...

[MPort in reply to RosemaryHarper]

Well Rosemary it is amazing that they paid for Rux. Well done on getting that. Years of loyalty doesn't influence their decisions. I am delighted to hear they pay for it. It is hard enough to get on NHS due to its high cost. When I went on Pegasys many years ago they refused point blank. You give me hope. Mairead

[socrates_8]

Hey RosemaryHarper...

My understanding was that MPNs were reclassified as types of rare blood cancers due to the abnormality of uncontrollably proliferated blood cells: red, white & platelets etc... (By the WHO in 2008)

WHO - Definition of PV:

(Swerdlow S.H., Campo E., Harris N.L., Jaffe E.S., Pileri S.A., Stein H., Thiele J., Vardiman J.W. (Eds.):

WHO Classification of Tumours of Haematopoietic and Lymphoid Tissues.

IARC: Lyon 2008, see pp. 40)

"Polycythaemia vera (PV) is a chronic

myeloproliferative neoplasm (MPN) characterized

by increased red blood cell

production independent of the mechanisms

that normally regulate erythropoiesis.

Virtually all patients carry the somatic

gain-of-function mutation of the Janus 2

kinase gene, JAK2 V617F or another

functionally similar JAK2 mutation that

results in proliferation not only of the

erythroid lineage but of the granulocytes

and megakaryocytes as well, i.e. “panmyelosis”.

Three phases of PV may

be recognized:

(1) a prodromal, prepolycythaemic

phase characterized by

borderline to only mild erythrocytosis;

(2)

an overt polycythaemic phase, associated

with a significantly increased red cell mass;

and

(3) a “spent” or post- polycythaemic

myelofibrosis phase (post-PV MF) in

which cytopenias, including anaemia, are

associated with ineffective haemato -

poiesis, bone marrow (BM) fibrosis, extra -

medullary haematopoiesis (EMH), and

hypersplenism.

The natural progression

of PV also includes a low incidence of

evolution to a myelodysplastic/preleukaemic

phase and/or to acute leukaemia

(AML)."

Patient Power Video Question:

Is an MPN a Blood Cancer or a Blood Disorder?

Published on January 7, 2015

Is an MPN a blood cancer, or a blood disorder? What are the definitions, and what is the difference? Dr. Srdan Verstovsek from MD Anderson Cancer Center in Houston explains how MPNs work, how they are different—or similar—to other types of cancers. He also explains how your treatment is determined by the type of MPN you have.

patientpower.info/video/is-...

Sponsored by Incyte Corporation, CTI BioPharma and Geron Corporation.

Hope this helps a little...

Steve

(Sydney)

[Searcher56]

I have been finding it a bit upsetting that my ET could be classified as cancer but since I went to the London Forum in November and Prof Harrison mentioned something that when a condition is classified as cancer, it gets priority in the NHS. Am I bothered now?