Ive been diagnosed with PV but im getting very much mixed information. Online says PV is a blood cancer and part of the MPN group, but my clinical nurse and gp have said its been reclassified as a blood disorder? I have no shame or worse feeling on the c word so i dont need protecting and have been on the mpnvoice website, which from reading class it as a cancer?
Has anyone any personal info or actually know the answer to this? I trust the sources online and trust my clinical nurse?
Hi @Rammie18? It sounds as though you are still struggling to find consistent answers. Have you called the helpline Yet? [0808 2080 888] I think they will be able to offer some really good advice.
Think I’m going too on Monday thanks @Nichola75
I’ve been on mpnvoice website and it states their that WHO has classified MPNs as a cancer and it’s been updated in 2020…
I’m going to be more proactive and start demanding answers…
On another note… had my forth venesection and have telephone (argghhh) appointment with haemotologist on Friday for an update…
Thankfully the gardening leave I’m off at work has given me the time to fully landscape the garden. I’m no pro but I’m pretty proud of my efforts and the several grand quoted saved.
Hi @Rammie18, I have found that sometimes I do have to be more assertive and proactive and actually to take printed copies of my evidence, but that doesn’t work so well with a telephone appointment, although I could read and quote my up to date information.
Well done for fully landscaping your garden, that is a real achievement and yes, I bet you have saved lots of money.
Please let us know how you get on Friday.
Thank you so much for not only being there and listening but caring too… means so much
Hi @Rammie18. It sounds like you’re in a really positive frame of mind. I admire your stance with your medical team as I quite often cave in and don’t stand up for myself as I have zero rapport with my team and constantly end up getting treated poorly by them. Good luck with the garden. I can’t even look after a potted plant. My landlord put one in my room when I moved in. I had to dispose of it’s corpse this week…
I have had essential thrombocythemia (another MPN) since 2013, living happily on 1000mg of Hydroxycarbamide/urea daily, and it does make me cross when medical professionals clearly have not kept up with the science. Myeloproliferative “disorders” (ET, PV and MF) were clearly and unequivocally reclassified as Neoplasms in, I think, 2007 or 2008. Neoplasm is another term for a cancerous condition. End of story.
The importance of the reclassification is that it allows access to different streams of research funding, so we hope increases the chances of finding other treatments for these conditions.
As the OP says, there is no “shame” in having a cancer, and unless it makes you feel better to think MPNs are not cancers, it really doesn’t matter what it’s called, disorder, neoplasm or Fred. It makes no difference to the treatment or the prognosis.
End of rant!!
I love your attitude and passion in what you are saying. And thank you for your words and content.
I just want to be in control of my diagnosis. I have no stigma on the label of having cancer though after losing a sister to it of a similar age mid/late 30s., I know my family will panic and though I am not at all I will if they either become obsessive or passive with me for dealing with their own emotions.
I have only first hand experience of what was a manageable cancer which then became agreesive and terminal and time from diagnosis to death was just over 8months. But I know this isn’t me, and everything written states that though it’s not curable it’s defo manageable like something like diabetes or asthma etc… so I’m not worried… I’m strong independent and proactive (with some need of motivation and incentive at times) to carry myself through…
I just lose faith, frustrated, angry with people who give mixed messages and have passive demeanor when it’s comes to my welfare, care and wellbeing, because it takes a lot for me to do the same. I’m more for others than myself.
Thank you again bud
Hi there like you I to have PV and it was my consultant told me it was a form of blood cancer and went on a trial drug for the last four years called Ruxolitinib and my levels have stabled no more venesections just the bone marrow extractions wasn’t very nice but was for my benefit also as I was on a clinical trail the manufacturers wanted details but have learnt to live with my condition and lead a normal life doing the best as I can until we get a vaccine keep safe
Ah thanks @Ronald it’s nice to hear from someone who also has PV and glad to hear trials have been good for you. Ruxolitinib was also mentioned in the mpn blood cancer book as a form of treatment so I’m guessing it’s now been approved and helping others amongst yourself.
Thanks for taking the time in posting … much appreciated
Quick question Rammie18 have they checked your spleen out when first diagnosed with PV my spleen was double the size when I had an ultrasound On my spleen I did tell them check this bad boy and they were surprised by the results but since I was put on Ruxolitinib my spleen is now it’s normal size that is something to keep an eye on
Hi @Ronald before my diagnosis in end of aug I had an MRI done in April and everything was clear. Did suffer from abdominal pain on upper left side and was adement I had an enlarged spleen but haemotologist checked it and said it was all fine on my first face to face meeting with him.
Thanks for your concern and heads up… I really do appreciate anything you have to tell me… as there really isn’t much getting to me.
It may be helpful that MPNs are cancers.
In case anyone does not know, one of the categories for being classified as ‘extremely vulnerable’ by the Dept of Health is blood cancer. However, I do not know if they are continuing to add people to their list.
Best wishes to all, Andy
Hi @potimarron, thanks for posting and a great big welcome.
I am not sure if the Dept of Health are adding people to their list or the list has been filed somewhere.
I would be interested in hearing more about you.
Take care of yourself.
How have you been?
Hey hope you’re well… thanks for posting too
I think during first lockdown letters confirming status were sent out but weren’t for lockdown 2.0. problem was I was diagnosed in August 2020 so I think I’m classed as extremely clinically vulnerable… as I know I have blood cancer but not sure if ecv is on my record?!
Hi @Rammie18 I think twice about suggesting this remembering past experiences but you could check at your GP’s and it should be somewhere on our notes. (thanks, I now have my records on my app)
For sure… I’m currently making up my own rules as instructed by Boris…
Ah cool… Glad you’ve got access to the app… Remember it will only go things ordered from GP not from a hospital or specialist, but your GP can download this to their files and thus giving you access to them.
Ugh just stumbled back onto this old post of yours @Rammie18 and I’ve had the very same issue of my haematologist stating only this year, rather dismissively, that my Polycythaemia vera (PV) is NOT cancer. He also told me the hydroxyurea I take every day is NOT chemotherapy.
I’m like, does he think living with this chronic blood disorder is easier if I don’t think of it as a cancer? That the treatment affects my body less if I don’t think of it as chemotherapy?! Such weird old-fashioned and frankly out-of-date knowledge and not at all helpful when every major health organisation considers MPNs as cancers. Thanks @DickM for that fact about MPNs being reclassified as cancers all those years ago.
Like you @Rammie18 , I don’t care either way as it still affects my whole body and self! I wonder how long ago these doctors trained and whether they do any professional development. Anyway, I’m changing my haematologist to one who has kept up with current medical thinking and has some bedside manners!
The crazy thing is this is not a thing of the past. I recently was in hospital for 4 days and each “different” doctor I saw on the rounds told me something different. Very contradictory, all with different reactions and treatments.
I know they’ve been through a lot of learning but I’d be much happily someone saying I don’t know I’m going to find that out for you rather then blagging and winging it…
I think when it comes to your health it’s so important to feel confidence in your provider and that your care and welfare is paramount.
There is a need to be tactful as a patient - I don’t like hearing you have to be aggressive, loud, demanding and persistent as a patient to get taken seriously as behind very profession there is a human but on the flip side people’s interest in what they do beyond the money is questionable but this is someone’s life you’re lethargically seeing as a temporary responsibility.
I think this is why forums like this is really important
Oh no, so sorry to hear about your recent hospital experiences. You’d think these folks working in a field with so many advances in research and treatment would try to keep up with it all. In fact, surely they have a vested interest in their own work and want to stay informed?! But a reclassification of MPNs 15 years or so ago suggests that these specialists are being lazy, if not wilfully ignorant, for whatever reasons.
Hopefully you’ll have better informed care next time, should you need it, @Rammie18. I think you’re right that our tactfulness can benefit our treatments, but we also shouldn’t avoid telling these specialists when they’re wrong. They are only human, after all!
Keeping my fingers crossed that whatever took you to hospital is well on the mend, dear @Rammie18. Yes, thank goodness for forums like this!!!