I may be passing on something that you all already know about - but just in case thought I would post a link for people to check out.
In particular, the thorny issue of the classification of our blood conditions as a rare cancer - as obviously, there are still medical practitioners who do not believe that MPNS are a form of cancer. This seems to show that as far as Cancer Research UK are concerned MPN'S should be regarded as such.
The link takes you to Myeloproliferative neoplasms, with further links to the individual conditions:
Hi Folks - its a while since I looked at the site and I might be wrong here but I'm sure it has changed and used to define MPN'S as 'cancer'. In my opinion CRUK and MacMillan have been reluctant to acknowledge our cancer as cancer for whatever reason. They may disagree of course but you can only go on what you see. MPN's are covered on the MacM site but don't appear as an entry on their list of cancers. What I can tell you is that a few years ago my clinical nurse applied to MacM on my behalf for a small grant to fix a leak in my kitchen roof and it was rejected on the basis I didn't have cancer, even though I was taking a cancer drug and it was very unclear if it would help me at that point.
I guess you can understand why some Consultants, GPs, Organisations, Insurance companies etc also don't easily acknowledge our conditions. I think it it should be absolute across the board and especially with our main cancer support organisations as I for one feel let down by them for their fence sitting as Osidge quite rightly says. Thank goodness for MPN Voice standing up and fighting our corner. Cheers Guys.
I keep watching all the arguments with enormous interest and will be so grateful when something becomes definite. I have been with BUPA Insurance since the '70's and they want me to provide proof that my PRV is a cancer and then they will cover me without question for anything to do with PRV. I am still trying to do that.........suggestions always welcome.
I don't know about others but I am getting really annoyed by this issue . Is it a cancer or not . Is Ruxolitinib a type of chemo or not . MPD or MPN , Biological agent or immunosuppressant . I think we all have enough to put up with without not knowing what we have or what we are taking . If WHO class it as a cancer but that classification is ignored , what's the point . All I know is , the anomoly is causing us all a lot of hardship , especially when trying to prove to government bodies we do need help . Sorry Man , we really do need your help on this one . Please stay strong and as well as possible my friends .
Oh dear I seemed to have opened a Pandora's box of frustrations and have wondered how best to respond. I fully understand and appreciate people's frustrations but I am also extremely grateful for all the information that there is out there these days in comparison to when I was first diagnosed and the huge distance that the medical profession and linked organisations have travelled in that time.
I have had ET for over 18 years, it was diagnosed when I was pregnant with my son. I had almost certainly had it for a few years before that, as I am now very aware that various health issues that had concerned me before that and had been investigated by doctor's (pain in hands and limbs, visual disturbances, headaches etc) but had up until then remained undiagnosed, were almost certainly ET related. When I was first diagnosed, I was told very little. I recognise that this is because they knew very little! I discovered the MPD Voice site a few years ago and for the first time I understood a lot more about my condition. I felt empowered with my new found knowledge, but also a little alarmed when I realised that it was termed a rare form of cancer. There is a huge amount of fear around this very evocative word, and when I first heard the term "chemotherepy" used in relation to the medication I was using I was also fairly unsettled. I think this may be one of the reasons why the medical profession are being careful about its use in conjunction with our diseases.
However, due to the fact that our bodies are producing too many cells, the specialists in this field have no other option than to describe it as such, as I believe the over proliferation of cells is one of the ways a cancer is defined. Hence the re-classification - in recent years - of our condition by the WHO. This has been very useful, particularly, in being eligible for Medical Exemption Certificates. For those of you out there having problems in getting them, I would strongly recommend that you do so through your haematologist and NOT through your GPs - this was the route I took. Go armed with the appropriate literature, if necessary.
But I honestly, wouldn't get so hung up the the definition of the "C" word. Yes, we do have a form of cancer, but it is not the same as say for example breast, bowel, lung or other forms of cancer - these if not detected early, lead onto secondary cancers, which almost always result in a death sentence. Our conditions are forms of cancer, but they are often very manageable and with the huge progress in research and discoveries in recent years I think we can also be relatively optimistic with the treatments that are being tested and which I am sure will become available to us, in the not too distant future. I have lived a completely normal life, (with the odd glitch along the way) and unlike friends and colleagues who have had different the forms of cancer, as mentioned previously, I have been privileged to watch my baby of 18 years ago grow into a young man of whom I am extremely proud. And I fully intend to be around for the birth of any grandchildren that will come along in years to come. I am 57, incidentally. So hang on in there fellow sufferers, I am sure the organisations will catch up as more is discovered. But as I said at the start- the advances have been enormous and rapid I am sure our patience and resilience will very soon be rewarded. All the best to you all.
Well Amarylis I would like to THANK YOU for your fulsome yet thoughtful response which covers not only the issues posed by your initial post but I would say touches on posts by many others. There are no easy answers but you completely nailed it for me in your last 2 para's and to me what you say makes complete sense. Having lost several friends, mates to various forms of the 'Big C' in the last 10 years I consider myself fortunate to still be coping reasonably well with my limitatations. And with new treatments available now and those on the horizon I'm very optimistic for us. Fair play to you for coping as well as you have and remaining so positive for this many years and all your years ahead.
And I will echo your sentiment to 'hang in there' coz after my diagnosis I didnt think I would see the day when I became a Grandad but hey ho life is full of surprises and my beautiful Grandaughter came into my life 5 weeks ago and it's a fantastic feeling. Im looking forward to celebrating many happy events in her life. Yippee. Aint life grand. X
Aye I forgot to say. On a lighter note every time you post I get Tony Christie and Peter Kay in me head - dah dah dah de dah de dah dah. . . and it sticks. Doh
I so wish you hadn't said that about Tony Christie. It's in my head now! I totally agree with amaryllis and you JediReject. I am 60 in a couple of days, my sister, sister in law and best friend from childhood all did not make it to 60. My 6th grandchild arrived 2 weeks ago and I fully intend to make the most of my life. I have had PV for 8 years and take clopidogrel and hydroxy with no side effects. I realise I am very lucky with this and not to have one of the other 'worse' cancers. Best wishes to everyone. xx
Hi JediReject and also piggie50 - sorry about the Tony Christie song! Although I always giggle as "we took it off " at the school I work in a few years ago, with members of staff re-enacting the Peter Kaye rendition - all sorts of ridiculous images, along with the tune, running through my brain!!! I'm glad you feel that my words were encouraging. That should be what this forum is all about - being there and encouraging and using our own experiences to support others. Hopefully, those who have lived with the conditions for a few years - and who are coping reasonably well - can pass on any advise that we feel might be helpful. We will each deal with things differently, and the symptoms and progression of the individual conditions will differ greatly from one person to the next - it is important to recognise that. But, as I said in my last post, that progress is going very much in the right direction for us all and the most important thing is to remain as positive as possible. By the way many congratulations on both your recent grandchildren - blessings on you all! - Amarylis - xx
I read the Cancer Research site too regarding PRV and it does state that it is not a cancer. I also spoke with McMillan nurses who told me that it is not cancer and it's just the definition that is given by the Americans.
Also on a first visit to the Haemotologist she said, "It is absolutely not a cancer, I am not an onocologist and i don't treat cancer patients" (by the way she is brilliant!)
She then proceeded to tell us that there is a difference between the definition of the word cancer and the diagnosis of the condition known as cancer. She said that the word cancer means 'uncontrolled cell growth' which PRV quite cleary is. However she said the condition cancer is associated with cell growth of bad blood cells whereas PRV is the uncontrolled growth of healthy blood cells. So this is why there is so much confusion and this is why it is known as a cancer but isn't a cancer!
To be honest to me the condition is PRV and the classification makes no difference at all really. But i wish everyone would make up their minds so we know whether it is or isnt cancer!
Hi I'm new to the forum but over the last couple of days I have found it comforting.
I have primary thrombocythemia and so my hb reading, which should be 11/12 never gets above 8/9 which means I am always anaemic, this is helped by transfusion when nessary. A year ago I was diagnosed with myelofibrosis, so I now have both!
My haematologist told me that this is cancer and that the classification was changed from a 'disease' I assume this is because there is no cure and no one knows what causes these diseases I have been 'stable' over the last few months. I know I am very lucky that medications don't seem to have adverse effects on me.
At one time I was taking a huge dose of hydroxurea and my platelets were all over the place and never below 700+. After trying mixing this with anagralide we seemed to be getting somewhere. I then progressed to more anagralide and knocking out the hydroxy. This has been fantastic and my platelets are now well set in the 'normal' range, and my hb although low is stable - I am one lucky lady!! My haematologist has suggested trying thalidomide + a steroid when the scar tissue begins to move in the bone marrow.
Is anyone out there on the either of these medications?
Is anyone else on anagralide ?
Whilst the 'c' word is not nice, try to tell yourselves the name of the classification is immaterial the 'disease, condition whatever doesn't alter what we have. I was told that et is not a cancer but myelofibrosis is.
We can't change our lives to make any difference nor can we change our diet to help we have to hope that some 'bright spark' comes up with something new to help it - I'm going for my bloods doing next week so fingers crossed I'll still be 'stable'
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