Thought that some of you might be interested in these findings, and wondering if any of you agrees or disagrees with the body of those findings, specifically or in any other way...
In my own view, it appears to be penned by someone that might not have an MPN condition themselves, and I am always wondering just how accurate a Survey / Report might be when it does not include the actual experiences of MPN afflicted people more directly, "Through their own words...?"
Interested in any feedback of course...
Stay safe & well...
Best wishes
Steve
A Deep Dive into Myeloproliferative Neoplasms: How Living with This Rare Condition Differs from Other Forms of Blood Cancer
Appears to be written by the pharma market for the pharma market ‘Here’s a group of blood cancer patients who are a bit different from the usual blood cancer patients you deal with. Guys you better think about how you talk to this lot. Potential new market????’
You’re right, it appears to have been put together by someone who has scraped through a broader survey. Clearly hasn’t the first idea about MPNs, symptoms and treatments - except in terms of percentage points relative to other cancer patients answering the same survey questions (which in turn have been geared to a broad spectrum of more common blood cancers).
This is the American market so pharma companies will be looking to communicate directly to patients. Perhaps I’m being too cynical!!!!
Nothing wrong w/ having a healthy level of cynicism my friend, in my view...
However, while I am not a fan of Big Pharma' either... This Survey Report, just appeared to espouse all the usual elements, and the Test sample for MPN patients was rather small, making it much harder to comprehend how they might have drawn such distinctions.
The one interesting point the authors of the study did make, (again, in my view...), was the passage that stated:
"Blood-Cancer.com patient advocate Deb Wesloh wrote in an article that “because it’s so uncommon, there isn’t the hype and media attention that surrounds other cancers.” Making things even more difficult, “you’ll never meet two patients that are the same.”
I looked up 'Deb Wesloh, it it became instantly apparent that she is an excellent writer, and definitely someone who knows what an MPN / Blood cancer journey is all about, not to mention that she is also a breast cancer survivor, as was her late mum...
Without a doubt, the best information, I have really ever gleaned about MPNs, is / was via other MPN empathetic patients, and survivors...
The amount of scientific Papers, that have a notable funding body acknowledgement, ultimately suggests that there findings suffer via some ulterior motive potential, ergo heralding, 'A Conflict of Interest', in my view...
Yes, I thought that the Deb Wesloh quote was pertinent.
The authors of this ‘Deep dive’ into MPNS are The Health Union which appears an interesting set up founded by two ex pharma executives (now claiming to employ 150 people).
It looks part Health Unlocked and (unsurprisingly) part ‘business’ claiming it does the pharma industry’s work for it (ie the patient interface element - patient surveys etc). Let’s hope they can dive a bit deeper into MPNs before they encourage people to head over to their Business Solutions’ offerings!
Read it, not keen, not accurate enough, and I am certain this article has not been written from the viewpoint/perspective of those of us that live our lives as best we can with MPN’s..
Perhaps the viewpoint from a genuine MPN patient or patient’s will be published in the not too distant future..
I believe many of us share similar symptoms, as to what degree is the question.
Thankfully we are all very different and what aspect of living with MPN
proves to be difficult for one individual, may not be of great difficulty to another.
Thus a broad spectrum of opinions, views of living with this blight would be good to read..
I am sure that many of us will find a Case History of Daily Life & MPN comparable with our own particular demons of this disease, which definitely blight’s our lives in my humble opinion...
I am now 27 months in from diagnosis of ET, followed 6 weeks later by MF, then ASXL1 mutation followed during 2018..
Not to forget I had the results of BMB on 18th April MF had arrived!
The following day a Saturday
19 April 2018, a letter arrived from Breast Screening, to give me the news I potentially had Breast Cancer.
I remember thinking, “what had I done to deserve this lot” ???
Surgery followed swiftly, and for weeks I didn’t know how or why all this was happening to me.
It was July before I got the All Clear on Boobgate !
I settled for that package uneasily and simply did my best to get my head around everything that happened during 2018...
Come November 2019 my burden was added to with the PV diagnosis.
Thus for me my plate feels rather full, and if I am honest, it’s taking some time to digest it all..
I also now feel and think about exactly, “ how much has been taken away from me”..
This rare disease was not on my Radar for Retirement after a long career of Nursing others in the Hospital environment..
I try very hard to remain positive and I always put on a Smile when I walk the corridors of my former place of work.
Colleague’s I may meet along the way, stop to chat & say nice things such as how well I look etc, etc.
They have no idea that I am constantly battling Bone Pain, and I quite deliberately ensure no matter my pain, that I walk tall and proud as I did for so many years in my Uniform...
My pride will not allow me to show the slightest hint in my appearance, that I am in pain, with every step I take along those corridors..
That side of my situation I keep for behind closed doors..
My CNS is a former colleague and friend, she see’s the real me and is aware of the mask I wear to hide my pain and thoughts on those visits..
I wonder how many of us here, put on that mask for family and friends ?...
I personally have come to the conclusion that many only talk freely here of issues, and on other forums where we have the luxury of anonymity...
Now that would make for an interesting Survey of us living with our particular flavour of MPN’s..
Where one can put forward in their words exactly how they feel, and how it has impacted on their lives...
That for me personally would be a good survey to read about...
I agree with You & Ebot on this and I for one would welcome a Survey on, Our True Feelings on Our MPN Journey, be it good or bad..
We are but humble humans making the best of what has been thrown at us...
I feel for the younger members amongst us, personally I have had a good life thus far, I have 4 adult children and grandchildren.
The only thing that being a Senior Citizen generally rules me out for is,
Stem Cell Transplant..
That’s absolutely fine with me, for our younger members that could possibly be of great interest if appropriate..
Thank you for posting this article, always interesting to read up on such matters etc, especially if truly written by fellow MPN patients...
Thank you also for your honesty and humility in explaining some of how you have been managing your own MPN journey...
You, and of course anyone else here, who wishes to contribute their MPN Story, I would be both honoured and privileged to POST it on our special MATES website page:
Just send me a Post and I will arrange the rest...
Maria, if there is ever the opportunity for you to avail yourself of a SCT, please don't exclude yourself just yet... Many people w/ an MPN do still have SCTs well into their 70s... and many do quite well in extending their longevity etc...
Thank you for the wise words always good to hear from you.
I am a member of Mates Australia as well you know, and I will send my story to Mates..
As you are aware I am not the best at the Computer Stakes, just the basics for me..
My daughter Sarah has given me some insight along with a friend on how to write my story with, Copy & Paste thus allowing me time to write everything I wish to..
I will get this done as soon as possible..
Always nice to hear how the folks in Oz are managing their particular MPN..
I see the membership is growing and I’m pleased for you..
A great deal of work went into creating your Forum for the good of folk living with an MPN whilst creating awareness & helping to fund much needed Research in Australia...
I would like to think my MPN Dance Days are not over just yet
I have taken on board what you have so kindly written..
I hope you are keeping well yourself and of course your mum, and managing the colder climate..
One of the key points of difference between MPNs and other blood cancers or related illnesses seems to be the absence of cure. For example, a while ago I heard about a young man who was doing battle with the non-Hodgkin form of lymphoma. He was on cycles of severe and exhausting chemotherapy, had lost his hair, etc ... but at least the end was in sight. After going through hell it appeared that he would soon be emerging on the other side with the cancer destroyed; he was told that his hair would grow back (albeit perhaps a bit more curly than before), his energy would return, and he would be able to resume the normal life of a healthy young man.
With MPNs the approach seems more about management of the symptoms and reduction of the associated risks rather than attempting cure (thus it is more like the case with diabetes?). I'm at an early stage in my learning about MPNs but I have the impression that some or all of the following may be relevant:
1) Many MPNers are diagnosed quite late in life (often around 60) and with good management of their symptoms, their average life expectancy may not be significantly shortened (though this says nothing about quality of life). Thus, especially when funds are limited, MPNers are not priority patients for cure when compared to, say, a young child with a leukaemia (nor so attractive to the media).
2) Medical science may not feel it has a convincing and reliable "cure" for MPNs beyond a drastic procedure such as stem cell transplant, which is not suitable for all patients and is unlikely to be offered to those of advanced age. There seems to be an ongoing debate between those who favour attempts to reverse the underlying MPN disease processes (eg: by use of Ruxolitinib and Interferon) and those who prefer "conservative" symptom and risk management (eg: by use of low-dose Aspirin and chemotherapy with Hydroxycarbamide/Hydroxyurea, though both medications have the potential to cause serious problems when used long term).
3) Because of the above two factors, MPNers may feel that they are left in a "wait, manage, and watch" situation, with the underlying disease perhaps having to get much worse before any "curative" action is undertaken ... and by then it may be too late ... This situation may create a vague sense of unease in the MPN patient (personally, I am already beginning to experience this). One may face a long war of attrition and decline, rather than a dramatic battle, and perhaps outsiders (even some doctors) are less likely to understand this, especially if MPNers are less obviously "ill" than other cancer patients.
Thank you again for starting another interesting debate.
My partner had non Hodgkin lymphoma- The treatment regime was tough. Chemo plus agonizing spinal injections. Many with the condition don’t survive. He has been 8 years in remission The permanent scars on my partners spine still cause him much pain. He is immune compromised. Plus he has advanced kidney disease probably due to the intense chemo. In addition you always wonder if it will return - chances vary as you know many cancers do come back. The chance of survival naturally lessens second time around. These other cancers have no quick fix! Personally l would rather have my managed condition.
Hopefully treatments will improve for us in the near future
However, I do wonder, how much faster one's longevity might be rendered for those people w/ a lesser constitution?
There seems little doubt in my own case that I have managed to forestal my own downward trajectory...
All forms of cancer, have or are affected by inflammation, in my view... How one manages that inflammation might well aid both one's longevity, and Quality of Life ?
When still a child or young adolescent I adopted 13 as my personal lucky number, as everyone else seemed to hate it so much! (My mother told me it was because 13 was the number of people present at the Last Supper, ie: Jesus and his 12 disciples.) I also like 91 = lucky 7 times unlucky 13 ... and 7 x 11 x 13 = 1001! There's a fun game you can play if you know any younger children with calculators (I suppose they would have these on mobile 'phones nowadays?). Get them to choose (but not reveal to you) a three-digit number, enter it on the calculator, then multiply successively by 7, 11, and 13 ...
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Repeat blood results ! 
