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.
Iāve been on mpnvoice website and it states their that WHO has classified MPNs as a cancer and itās been updated in 2020ā¦
Iām going to be more proactive and start demanding answersā¦
On another noteā¦ had my forth venesection and have telephone (argghhh) appointment with haemotologist on Friday for an updateā¦
Thankfully the gardening leave Iām off at work has given me the time to fully landscape the garden. Iām no pro but Iām 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 doesnāt 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.
Hi @Rammie18. It sounds like youāre in a really positive frame of mind. I admire your stance with your medical team as I quite often cave in and donāt 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 canāt even look after a potted plant. My landlord put one in my room when I moved in. I had to dispose of itās corpse this weekā¦
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 ādisordersā (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 āshameā in having a cancer, and unless it makes you feel better to think MPNs are not cancers, it really doesnāt matter what itās 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 isnāt me, and everything written states that though itās not curable itās defo manageable like something like diabetes or asthma etcā¦ so Iām not worriedā¦ Iām strong independent and proactive (with some need of motivation and incentive at times) to carry myself throughā¦
I just lose faith, frustrated, angry with people who give mixed messages and have passive demeanor when itās comes to my welfare, care and wellbeing, because it takes a lot for me to do the same. Iām more for others than myself.
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 wasnāt 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 itās 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 Iām guessing itās now been approved and helping others amongst yourself.
Thanks for taking the time in posting ā¦ 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 itās 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 upā¦ I really do appreciate anything you have to tell meā¦ as there really isnāt much getting to me.
Hi,
It may be helpful that MPNs are cancers.
In case anyone does not know, one of the categories for being classified as āextremely vulnerableā 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?
I think during first lockdown letters confirming status were sent out but werenāt for lockdown 2.0. problem was I was diagnosed in August 2020 so I think Iām classed as extremely clinically vulnerableā¦ 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 GPās and it should be somewhere on our notes. (thanks, I now have my records on my app)
For sureā¦ Iām currently making up my own rules as instructed by Borisā¦
Ah coolā¦ Glad youāve got access to the appā¦ 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 Iāve 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.
Iām like, does he think living with this chronic blood disorder is easier if I donāt think of it as a cancer? That the treatment affects my body less if I donāt 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 donāt 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, Iām 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 ādifferentā doctor I saw on the rounds told me something different. Very contradictory, all with different reactions and treatments.
I know theyāve been through a lot of learning but Iād be much happily someone saying I donāt know Iām going to find that out for you rather then blagging and winging itā¦
I think when it comes to your health itās 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 donāt 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 peopleās interest in what they do beyond the money is questionable but this is someoneās life youāre 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. Youād 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 youāll have better informed care next time, should you need it, @Rammie18. I think youāre right that our tactfulness can benefit our treatments, but we also shouldnāt avoid telling these specialists when theyāre 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!!!
