Post by MPN-MATE Admin » Thu Feb 06, 2020 10:49 pm
Hey everyone...
I came across an interesting article the other day that set me thinking about one primary question:
"HOW LONG HAVE YOU HAD YOUR MPN FOR?"
It is an interesting question across a number of fronts, in my view...
You see, today, now having already been diagnosed I know with my superior 2020 vision that many of the symptoms that I suffer from had been with me for quite a long time... Nevertheless, the WHO had not even recognised MPNs were abnormal rare blood disorders that create an over abundance of blood cells by copying mutated cells until 2008... Hence, most doctors might be forgiven for Not Knowing anything useful either...
However, those symptoms... probably snuck up on me over many years... Some of those symptoms would have been things like:
* Mental confusion
* Bone & joint pain
* Vision impairment issues
* Nausea
* Oral & nose bleeds
* Flaky nail cuticle especially on my hands (But feet too)
* Transient Ischemic Attacks (TIAs) x2 in my case...
Why is this important one might ask? Well, for one thing a TIA can permanently impair a person's life and on some occasions perhaps even end it prematurely... However, wouldn't it also be nice to have known that all of those phantom symptoms were real and NOT imagined...?
Knowing about them also might have helped prove a diagnosis... or even plan for the birth of a child... The point is that there are many excellent reasons for learning about our conditions as early as might be possible, is there not?
This article talks about How to recognise a transition to a Cancer condition years ahead of tumorous development by having a Gene Panel Test.
Hope that you might all realise that this technology has the potential to know years ahead of diagnosis, and that fact alone might be enough to halt or even potentially cure a Cancerous condition, before we might reach our twilight era...
Best wishes
Steven
FEB. 5, 2020
Signs of cancer that occur years before diagnosis could lead to earlier cancer detection
Steve. The text seems to refer to two papers but I can only see a link to a single paper. Are both available?
Without seeing the second paper my concern about the research is that genetic testing to look for certain mutations might identify many people who will never go on to develop a particular cancer or only very late in life. This can generate terrible anxiety and ruin lives.
The current fashion for genetic testing is creating additional demands on medical services from the worried well saying they are at increased risk of one disease or another.
Information without understanding is not always a good thing.
My point is that telling someone that they WILL get a disease in 10 -15 years time is very different to telling them that there is a RISK that they will get a disease in 30 years time.
If there is absolute certainty then there is little point in trying to make changes.
If there is only a risk, a " rational" person would want to understand the magnitude and uncertainty of that risk, the nature of the disease and what can be done to reduce or avoid that risk. The availability, success and side effects of treating/managing the disease are also relevant. On the other hand an "irrational" person might conclude that they definitely will get the disease and make life choices accordingly.
My understanding of the science is that most of it is retrospective - looking at the genetic mutations in people with a disease such as cancer. For most cancers there is little or no data to demonstrate that if you have acquired a particular mutation then you will definitely develop the associated cancer.
Having said that I am all for diagnosing a disease as soon as possible. I often wonder how many people die before their MPN is diagnosed. Given the age profile for people diagnosed with MPNs I doubt it is insignificant.
I did not say I knew exactly when I developed an MPN. Just that I have probably had an MPN for a great many years without really knowing...
The point I am trying to make is that if earlier detection was possible perhaps many of us need not have been jeopardised by the ignorance of a lack of diagnosis...
For example: I had a TIA (minor brain stroke) that was misdiagnosed as a pinched nerve, and that could have permanently impaired me or worse...
I wouldn't class it as a major illness unless it progresses to leukaemia, which is rare. Sometimes, disease is missed, even when well advanced, like my mum whose aggressive abdominal cancer was not diagnosed until it was too late and in hospital.
Hi Steve, I still read your posts and are very happy you are keeping well. I am not very well and when I saw Paul telling someone that passive patients don't get the best care,I thought he is right ! So I plucked up the courage to ask to see a specialist, which was duly arranged.
I wish I hadn't bothered! He was a very nice man, but I still feel patronized. When I said I think I have this for years,he agreed with me then promptly slapped me down saying not decades.
When I expressed concern about the BMB not being sufficient he said it was fine and I will not ever need another.
I expressed concern about the lymphoid nodules that were found, he said everybody has those.
When I received a copy of his letter to the GP I read, Thank you for referring this 59 year old ' Housewife'.......! BMB confirming ET calr. She also had grade 1 fibrosis ( news to me) 2 lymphoid nodules but the trephine was insufficient to make a diagnosis of lymphoproliferative neoplasm 🤔
Aaaaargh!!! - oh Bridie, I know just how much courage it takes to ask for a referral, but then to feel again that you are not being taken seriously - it really, really doesn’t help!! - please don’t give up on the search for a specialist who is prepared to work with you ( my new haem I think is still tippy toeing round me, but does appear to at least be taking on board my need for involvement in my treatment) - all the very best
Anne-Marie xx (p.s. In one of my letters to my GP I was just called a ‘pleasant lady’ ?!!)
To quote the infamous Donald "You are fired!" It is absolutely true that assertive patients receive higher quality care. Passive patients do not. This comes into play when a doctor provides sub-standard care, which is sounds like is what you received. You do not have to tolerate that. I would take a few steps if I were in your situation (which I have been before).
1. Fire the doctor
2. Formally complain about the poor care you received.
3. Do not give up. Find a better doctor - a MPN Specialist who treats patients with compassion and respect.
To quote the illustrious Winston Churchill "...never give in, never, never, never, never—in nothing, great or small, large or petty—never give in except to convictions of honour and good sense." This absolutely applies to how we manage our own health care. There are truly wonderful knowledgeable doctors out there who can provide you with the care you deserve. It is up to you to advocate for yourself to be sure you receive the care you deserve.
Please don't be discouraged even though I know it is easy to feel this way. I wouldn't have been diagnosed if not for my efforts and a good physician who kept on digging to help explain my symptoms. I feel very fortunate to have her and that she didn't brush off my concerns I'm not an imposing person and I always feel out of sorts asserting myself, but I think I've learned my lesson.
I'm with Anne-Marie. Keep on searching.
P.S. Also a housewife. Not sure how I'm described on charts.
It is however important to remember that many people who have MF, (like myself), might survive the MF only to perish via either a serious infection impacting upon our compromised immune system, or even via stroke...
In many respects, for some of us it is like living with the 'Sword of Damocles' ever present hanging over our heads...
Morning from a very wet yet once very hot & dry Sydney town recently ablaze with fire... Now we are flooding...
At least the fires are all but extinguished... & the dams are refilling...
Cassie, please don't underestimate how disruptive MPNs like ET & PV might be... In my view, they are also quite serious illnesses it is just that they are chronic by nature & therefore can have the capacity to live with those afflicted, in some cases for decades...
Don't forget, some...circa 10% also can progress to become Myelofibrosis (MF), and some MF can progress circa 15-20% to Acute Myeloid Leukaemia (AML).
Therefore, it is really up to us as to how we decide we are going to try to manage our various MPNs, and to what sort of a life we want to have...
If we really take the best care of ourselves that we can... we just might extend our longevity & lead almost normal lives...
However, in my view... Living with an MPMN is no picnic...
Here are a few links about the three classic MPNs:
Sorry you have flooding now. We have in some parts of UK and we are being battered by storm Ciara.
Thanks for the link to ET. Didn't realise it was so rare.
My platelets have only just reached 530 but I am high risk because of age, hypertension and have had breast cancer.
I'm having bone marrow biopsy soon and consultant wants to start me on Interferon in May. According to her, and she is a specialist in mpns, she can cure me.
Hi Cassie - cure might not be the correct word, but control certainly is. I also have a consultant whom specialises in MPN. He is always confident that once it’s under control - my Platelets are 1000+ and I’ve also just started on Interferon that it will be easily managed and that I can expect as near to normal life span.
First and foremost, really well done for taking action. That was a bold move on your part & I firmly believe absolutely important for you to have done so... Stay strong!
Unfortunately, both there in the UK & here in Oz... A great many doctors are still only beginning to learn more about MPNs...
One must remember that the 'Driver' cell mutations, believed to cause our MPN conditions have only really been a part of the last 15 years or so... And therefore, many are still learning about MPNs, and mostly from the patients that they come into contact with, (and that is a rarity too...)
So while it might seem more than just an inadequate 'bedside manner' on display with many doctors, many of them simply don't know enough & in their ignorance... just try to do muddle through the best that they can... in my view...
Obviously, your last experience has not helped your levels of confidence much, but please don't be too put-off... Keep going until you find the right fit for you, and reach out to Maz for some help finding a better specialist option... but don't give up whatever you do...
Stay strong and keep us all Posted as to how you go with your search... We only fail when we cease trying... Try to imagine the sort of assistance you are seeking, (in an ideal world), & simply try not to settle for less... Sounds harder than it is, in my view...
Personally, I know that I have had my MPN for well over 15 years... possibly 20+ ...??? Based upon what I have learned since my diagnosis...
It is my guess that most MPNers might speculate somewhat in a similar manner...
Best wishes Bridie...
Steve
PS. Bridie... I love that you too refuse to be one of the invisible people...
Yes, I too found that viewing the issue retrospectively w/ 2020 vision, can be quite an epiphany for some...
So how old were you at diagnosis?
I was 57, however, I can safely assume that I've been the beneficiary of my MPN for circa 15-20 years earlier, which might have seen me diagnosed in my late 30s?
Fortunately, I am still here, but that was more good luck than good management...
How interesting and how uniquely different we all can be...
I have MF, & as a result I really struggle in the cold, it actually hurts! Whereas, I now seem to be able to enjoy warmer climbs much more readily...
However, I do still need to protect myself while i'm out cycling for really long distances in particular... Some rides can be 6-7 hours in duration... And our dermal layers are less protected with our med's etc...
Since being on Ruxolitinib, there is very little itching these days... Was much worse when on HU & Interferon Alpha...
Yes, I have heard many stories about how some doctors have even suggested to their MPN patients that they should see a psychiatrist ...
Mostly, I believe such misunderstandings stem from doctors who no longer bother to read and research via medical journals and other peer-reviewed scientific findings...
Here in Australia, I have started our own MPN Patient's Forum called 'MATES'
Please feel free to drop by anytime Angela ALL people everywhere MPN affected directly or indirectly, are most welcome to join the discussions of course...
I am also taking on an epic cycling Fundraiser to create more funding for MPN Research ...
20,000kms in Under 200 Days...
Here in Australia, there are presently really only Two (2) MPN specialists, when there might be as many as 30,000 Australians w/ an MPN ???
Hi, Steve, interesting article. I, too, think that I had an mpn prior to my diagnosis in 2008. I always attributed my symptoms to fibromyalgia ie; brain fog, balance issues, weakness in my legs, etc. I saw orthopedics, rheumatologists, physiatrists over the years but most don’t do bloodwork. I left teaching in 1998 because of my symptoms. So I believe your article has some merit.
Hello Steve, thank you for the paper, like you I like to know, then at least I can take measures to help myself. I was diagnosed with ET in 1992 and was very lucky because I went to see my GP (I never went to see the doctor, it might have been that still little voice inside me) because I had a cold sore and thought I might infect my children. The doctor ( I will always always be grateful to him) said it was not a cold sore and ordered a blood test. The results came back and they thought I had cancer. If I hadn’t gone to the GP then I am sure my symptoms would have remained undetected until I had a stroke or heart attack...My ET progressed into PV.
I always look forward to learning more about our disease. Please can you tell me what you do to help yourself. Do you exercise, take supplements, have a special diet? Thank you
2020 hindsight can be a most useful tool... However, it seems to be more than apparent that many of us with an MPN often share interesting similarities concerning issues of misdiagnosis & doctor ignorance. There others who have been told they require psychiatric analysis because there is nothing wrong with them etc...
After all, we are all only human, and we do err upon occasion, do we not...?
Sometimes our Narcissism gets in our way, & sometimes we might take action based upon some form of cultural tradition or it might just be we are acting in an almost automatic rut-like fashion that closes off the possibility of seeing another's perspective other than our own.
One of the best epiphany I've experienced was a short extract of Plato's called:
"The Allegory of the Cave". I highly recommend it!
That said, we are quite unique in that each of us are the subject to an ever-growing set of variables that might govern our MPN; our genetic history, environmental exposure, gender, age, ethnicity... so many causal impacts & not all are apparent in nature, in my view...
Hence, in my own experience, & in order to further my longevity... I decided about a year after diagnosis to do everything I could to better understand my MPN and improve my chances of survival by changing certain aspects of my lifestyle, which included:
* creating for myself an anti-inflammatory dietary regime
* an exercise routine that I could continue to improve over time
* to me knowledge is vital in my understanding of all things
* always be proactive & ask questions
* & a strong ethic & belief that I am a survivor
Last April, I commenced my own Fundraising event that continues to grow in scope and soon developed in Australia's first MPN FORUM Website called 'MATES'
Having this little mission of mine helps me to stay focussed and work towards bringing much greater Awareness of all things MPN to our broader community...
Please feel free to browse the website. Maz & MPN Voice also helped to provide some of the bona fide medical information that appears on the site...
Once again you astound me with your knowledge and thought provoking questions!
I was officially diagnosed with PRV on the 16th February 2015, after years of 'medical mystery and misdiagnosis'...
I had a stroke in late August 2012 (non-smoking, normal body weight, light alcohol drinker, and I exercised daily) As I've previously said I was initially diagnosed with MS - I woke up one morning, while on holiday in Cornwall and couldn't feel my right leg from the waist down - I also couldn't remember what year it was and the right side of my tongue felt numb and fuzzy! (but, I could stick my tongue out, raise my arms and my face hadn't fallen)
On the day I was diagnosed in 2015 my haematologist showed me my blood test results on the computer screen and said 'You've had PRV since roughly 2009 and I can guarantee that it was the cause of your cerebral infarction'
I had been visiting my GP regularly since 2009, with vague symptoms, - 'I just didn't feel right' - joint and bone pain, confusion/memory recall issues... (I was working for a mega company at the time, in a 'management position') nausea , dizziness.
I had numerous blood tests taken - but, all of them concentrated on my hormone levels... I was a woman in my late 40's. All of the Doctors who saw me initially thought 'menopause'. And ignored, or didn't look at the other blood levels... During this time I was also diagnosed with high BP and Supraventricular Tachycardia! (high level job = Stress)
Then peri-menopause began for me at age 50 and so did the stroke - I was no longer experiencing the usual 'normal' monthly venesection (menstruation).
On being officially diagnosed with PRV (Jak2+) in 2015 I felt like jumping for joy.... If only I could have jumped... sadly, the after effects of the 2012 stroke means that I can no longer jump, run, or wear slip on shoes - and my balance is also questionable (no more yoga for me as I topple over)
My advice, especially to women approaching peri-menopausal age who are experiencing vague symptoms would be to ask for and get your doctors to check your full FBC... and also question and query everything. Sadly back in 2009 I didn't.
Hi all. My haematologist must be quite enlightened. She told me I had probably had ET for years and as we went through the symptoms - itching being one I realised this was the case. I went to the doctors 15 years earlier about this and he just said it was stress. If only I had had the blood test then...
Oddly when looking back, being itchy after having baths/showers was my first noticeable symptom that I went to my doctor about - blood test later and was immediately diagnosed MPN. This was in 2007
Thought this may interest you. I am still keeping well but ET appears to be slowly evolving to Poly cythemia vera
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Sad News from Sweden
catkinspolymer•
a year ago•13 Replies
I have just received some sad news that my Swedish friend mentioned below has just died from complications following an operation for a peptic ulcer. He was 76 . I suppose the good bit is that he did not die from his Poly cythema vera .
I have searched through my old notes on my case which may be of interest .I am now nearly a 74 year old man living in the wilds of Wiltshire and still going strong whilst living with ET.
I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years.
Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance.
It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.?
Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do.
all the best hope the spelling is up to the mark.
all the best
Chris Atkins
Brit 74 years old ET diagnosed in 1996 but some evidence of MPD in 1985 9 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
Thanks for sharing & yes your story is quite an interesting one indeed...
While there are many academics out there who share their opinions that MPNs are most likely acquired somatically & NOT genetically via say a familial disposition...
... there are other schools of thought also...
Really glad to learn that your MPN helps you do more than you might have otherwise... Hopefully, I am trying to emulate such a disposition in my own endeavours ...
Vitamin E is something that I am often found lacking in...
I have taken supplements previously which I believed did assist me in some ways...
However, I am not a 'mouse'. To be frank with you, I am unsure of the claims made in this article concerning being beneficial for people who might suffer from a TIA etc...
Nevertheless, Vit' E supplements can be useful all the same...
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3rd dose COVID vaccination for MPN patients
