Hi @Rammie18, you sound like me that it is the things I cannot control and the waiting for others that makes me anxious and frustrated. It’s so difficult isn’t it. Take care and keep us posted.
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@Pisces56 @Jilly20 @Erica @SuBloodcancerUK @Willow @Graham77 @Nichola75 @Janet
So finally heard back from clinical nurse…
And PV has been reclassified a few years ago as not being a cancer but a disorder…
It can lead to blood cancer but I’m more at risk of DVT, strokes and heart attacks …
Not sure how to feel about it… Pleased?? still lost…?? Scared?
Least the decision not to tell anyone has helped as mentioning the c word causes all kinds of chaos to others… Just feel a bit stupid
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Hello @Rammie18. I really am so sorry that you are having all this hassle and for all the distress it is causing you. I hesitate to disagree with your Clinical Nurse but the MPN Voice website (mpnvoice.org.uk) clearly states that the World Health Organisation (WHO) reclassified PV, ET and Myelofibrosis as myeloproliferative neoplasms in 2008. Previously they were classed as myeloproliferative disorders. The fact that they are now neoplasms means that from April 2009 all patients are eligible for free prescriptions. Maybe it would be worth directing your medical team to the MPN Voice website? Please let us know how you get on. It is so unfair that you are having this battle. As I said before, because the blood cells are forming in an uncontrollable way, the WHO classes it as a form of blood cancer. Warm wishes. Willow
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Thanks @Willow
I’ll definitely so on to Mpnvoice and do my own research. Watchinh videos on YouTube on people who have blogged with PV have said it’s pretty common to be pushed around… and I guess in the current pandemic you kinda give benefit of the doubt …
It kinda doesn’t fill you with confidence to say anything regarding how you are feeling or symptoms you’re feeling if you have an expectancy that you’re milking it and it’s really nothing to worry about and stop overreacting .
Thanks again for replying @Willow much appreciated as always
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Thanks again for directing me to mpnvoice.
I know many have before but you obviously had given the final nudge I needed
Mpnvoice “your guide to be Essential Thrombocythemia and Polycythemia Vera”
Clearly states that I am entitled.
It’s just casts doubts on whether I now even have PV? Especially speaking to gp and texting clinical nurse
I feel like just a fraud at the moment
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Hi @Rammie18, please do not feel stupid or a fraud, I expect you have a range of emotions and thoughts going on. You can see by these posts the confusion there is. GP’s might not even see or hear of a case in their careers. Take care.
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Hi Erica,
Yes it’s very informative on this forum , of course we are all in a similar boat, it’s nice that we can share info and experiences to try and help each other
I’m doing ok thank you although it’s been stressful at times during lockdown and more so coming out of it
Hope you’re well x
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How are you getting on with this @Rammie18?
Just as @Willow has said, MPN is classed by the World Health Organisation (WHO) as types of blood cancer. This means your care and treatment follows national cancer guidelines and you should have access to cancer support services.
Hope you get this sorted soon as it sounds like an added stress you don’t need!
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Thank you @Alice_BloodCancerUK @Willow @Erica
I had this reply from mpnvoice and feel better and it only supports what you guys and the other wonderful people on here have said since posting…
"Yes, PV is classed as a blood cancer, as your Clinical Nurse has said, the WHO reclassified MPDs (myeloproliferative Disorders) in 2008 as MPNs (myeloproliferative Neoplasms). This is because the word ‘neoplasm’ (new growth) is a term that has been used both for cancers (malignant neoplasms) and non-cancerous tumours (benign neoplasms). Because PV, ET and MF (the 3 MPNs) are characterized by uncontrolled cell growth, most haematologists and cancer organizations do classify them as blood cancer.
It can be quite scary when you are told that your PV is classed as a blood cancer, but you need to remember that the symptoms and prognosis can vary widely, and your specialist will advise you depending on your individual circumstances.
This re-classification did have some very positive benefits to MPN patients, in that MPNs could be and are, included in trials and studies for blood cancers, whereas when they were called disorders they would not have met the criteria to be included, and it also gives MPN patients access to different medications and drug trials for new medications.
Another benefit to MPN patients is that they can now claim on any critical illness insurance policies, many people have been very successful in claiming and have had mortgages paid off etc, so if you have any insurance policies it is worth checking if you have critical illness cover and consider making a claim.
You are also entitled to a prescription exemption certificate, if you are prescribed any medication for your MPN you do not have to pay any prescription charges, you need to ask your specialist nurse, or consultant, to complete and sign a FP92A, they should have these forms in the department. "
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That’s really good evidence for you @Rammie18, take care and keep posting.
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Thanks so much for sharing this @Rammie18! I hope it helps you in your conversations with your CNS. Take care, Alice
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