Post by MPN-MATE Admin » Thu Mar 26, 2020 9:05 am
Guys...
Morning to all of you wherever you might be...
This is a subject hat has always grabbed my attention and piques my own irresistible curiosity...
DO MPNs RUN IN FAMILIES?
A new study is now underway in the USA, where they have commenced testing whole families because in some cases, whole families might have had an MPN, and or the JAK2 mutation...
mpn-mate.com/forum/viewtopi...
Best wishes all...
Steve
Thanks Steve, I’ll take a look later.
Just to say though I’ve always had suspicions of this. I even asked this question on the forum some time back. There are ‘clusters’ of familial cases around the world and Maz responded at the time, saying research was currently being carried out into this.
My Father died in his forties of a sudden coronary thrombosis. Since my ET diagnosis I’ve often thought about the possibility of him having an undiagnosed MPN. I would love to know for the sake of my children.
My suspicions came about when I noted on this very forum that quite a few people had more than one member of their family diagnosed with an MPN. I always thought and still do for a supposedly rare disease in the first place that this was a bit odd.
Mary
Hey Mary... 
Yes, it is quite a fascinating topic is it not?
My father also suffered from Non Hodgkins Lymphoma (NHL), and in the first instance one might think that could not be related to a Myeloid condition... (?)
However, another of our members Annie was originally diagnosed w/ ET that masked her later discovery of NHL... ?
Hence, it would seem that many more things are always a possibility, and we should not automatically, (or Narcissistically cleverly), rule such things out, in my view... 
I have also contacted the site in the USA because they are also conducting studies on Inflammation, which in mind has a great deal more to do with our MPNs...
Best wishes Mary...
Stay safe & well... 
Steve
Hi Steve
I would be really interested in the outcome of contacting the site in the USA - sounds really interesting and I keep having random health issues and always no answers on the back apart from being on medication and that can cause problems. I am really interested in the studies on inflammation! I asked for both my children to be tested but the hospital refused saying no link but it looks like now the more we know this may not be the case.
Take care
Becky
Hey BeckyDing...
Yes, it certainly has piqued not only my curiosity but many more MPNers here on the site, that might indicate that mere random chance is far less likely than many others might care to believe...
I shall also try to keep everyone Posted as I come to learn more over time...
Stay safe, happy & well Becky...
Steve
My father died of a heart attack in his 50s,his three brothers before him,then my three male cousins,all were musicians,not that I suppose there is a connection,except for life style....so I have often wondered if blood was something to do with it.....I am all that is left on my father s ?Keep well Mary,xxxSally
Hi Sally, I have been reading your response posts. It seems being geographically isolated from neighbours at least gives you some freedom to exercise without fear.
You take care of yourself, and we will get through this.
Mary xx💕
I still worry tho Mary,daughter in UK ,no way will see her for ages worry if hubby & I succumb who will care for my dogs and old mare!!!Its a thing we MP Ners could do without .You are care too.
Sally xxx
I can definitely relate to your worries Sally. It makes it so much harder to face difficulties when family are not close by. I hope you can manage to at least Skype your daughter.
There’s no short term solution for any of us, we have to do this, but there will be light at the end of the tunnel, and we will all be stronger because of it. You will do it too.
We must put any negative emotions in a jar and place the lid firmly down and concentrate on the positives. This is what will get us through.
Spring has definitely been in the air here the last few days. I imagine this must be a beautiful season in South West France. There is so much beauty appearing all around us, and somehow it’s much more profound. Can you imagine this crisis happening as winter approached, much more depressing! Light will overcome this darkness.
Take Care Sally, you’ll be just fine.
Mary xx🥰
Mistakes in my post to you,did it without my specs!!!!!
Beautiful weather here ,dare I say we need some rain!!!
Keep well,take care .Sally xxxx
My grandfather died of cardiac arrest as he was just sleeping in his bed.
Hey Gracey...
That might be related but you would probably need to know a bit more about what his condition was before the stroke etc...
Hope you are keeping safe & well too...
Best wishes
Steve
Hi Steve. I've often wondered about this as my Father died suddenly at 48 of a coronary thrombosis, three of his brothers also died before their 60th birthday. They were all relatively fit healthy men... non smokers, not over weight and active. I have a distant relative who lives in Australia... we got in contact via a family history site, and during our email conversations I discovered that her Father and his two siblings also died of coronary thrombosis before the age of 60.
My Mother was also treated and thankfully survived Non Hodgkins Lymphoma. It's definite food for thought.
Hey Kari...
That is really interesting too ... Many connections within your immediate and apparently your extended family tree...
Did you check out the website in the USA?
Might be of an interest for you to get in touch with them, as will I shortly... In the hope that we might learn more from their research to date etc...
In any event, stay safe, happy & well Kari...
Best wishes
Steve
My first cousin had Non Hodgkin lymphoma and was successfully treated too. However, that was on my Mother’s side.🤔
My father passed 3 days before his 87th B'day... However, he successfully lived through three remissions of NHL. There was not much left of his body by that stage however...
It seems to me that there must be some sort of link between NHL and MPNs...
Hopefully, this research might help eventually shed more light into these darker voids...
Best wishes Mary...
Steve
Hi Steve , cheers for the share. When diagnosed with PMF I asked my consultant at the time who struck me as a learned man about any family connection. His answer was a flat No I was just unlucky. . My reason for asking was that my poor mum had Myeloma and passed age 61, her mother had a type of Leukemia and passed before I was born at a young age. . . So as you can guess I wasn't convinced by his dismissive response.
I welcome the study as it may inform how MPNS are picked up or even prevented in families in time.
Chris
Cheers Chris...
Yes, I have long believed that there is a possible correlation within families, and thus it will be interesting to learn more from this study as it progresses etc...
Much to learn as always, in my view...
Steve
Hi Socrates
Like others who have replied, my father suffered a fatal coronary thrombosis - a week after his 31st birthday. It was in 1954 when little was known about ET. I was diagnosed with JAK2+ ET (now progressed to MF) 7 years ago.
Barbara
Hey Barbara...
Nice to make your virtual acquaintance. Thanks for your reply, while I am sorry to learn about both your father and your subsequent progression to MF, I am also glad to learn that you are still here after seven years too... I also have MF these days, after initially being diagnosed as ET etc.
It is most interesting indeed to continue to see that many others have some sort of connection within their family tree too...
Best wishes
Steve
My sister was the first to receive a diagnosis of ET some 17 years ago now. I was diagnosed with PV 7 years ago. My sisters has now morphed into PV.
My mum has recently started seeing the consultant too. Her HGB is slightly higher than it should be, although they have been unable to confirm a diagnosis of PV.
Hey Paul...
Hope you are well buddy... Fascinating to see is it not that there appear to be so many that have some sort of familial connection?
Stay safe & well my friend...
Steve
And you
Hi. NaN, mum and daughter with ET jak2+. Oxford took some blood for research. Jx
WOW!!!
Bingo... that is like winning the Lotto... Astounding and obviously there must be something in the water around your place...
It will be interesting to learn more about this study in time....
Thanks for your response and stay happy & well Jlah
Best wishes
Steve
Glad to see this posted. I have a JAK2+ PV. My daughter (age 34) was recently diagnosed with JAK2+ ET. Her HCT is a bit high, so she may be edging into PV too. We are participating in this familial study. I have been in touch with Dr. Angela Fleishman who is heading up this study. She is also involved in looking into the role of inflammation in MPNs.
My brother was recently diagnosed with a high grade non-Hodgkin's B-Cell Lymphoma. There is some thinking that there is a genetic link between MPNs and this as well. We do know that as all three of us have Neurofibromatosis type 1 we are at increased risk for various neoplasms anyway.
This genetic research is really important for us all. I hope that anyone else with a family history of MPNs will participate in this research or similar projects.
Hey Hunter...
That is fascinating to learn. There is obviously some type of genetic link but it will be fascinating to know more, as more is uncovered within the research project. It is a pity that it is confined to the States. However, it is a good start all the same...
Please do keep us all Posted as you learn anything new...
Stay safe & well my friend...
Steve
For years I have wondered (in an informal, lay person's way) if there is such a thing as an "inflammatory" type of person, where the word "inflammatory" is used in both the psychological and medical senses. I think this started with one of my heroes, Beethoven, who certainly had a violent/fiery temper and also medical conditions which some believe may have been auto-immune/inflammatory in origin.
I was diagnosed with JaK2 ET just over a year ago and joined this forum more recently. Since starting to read the postings by members of the forum I have been struck (again in an informal, not scientifically researched way) by the number of people who either have a close relative with an MPN or a close relative with a condition such as diabetes, rheumatoid arthritis, etc.
This got me thinking about my own family. I had never heard of MPNs until my own diagnosis and as far as I know there has been no other instance among my close relatives but there is quite a bit of illness that might be somehow connected. My paternal grandfather (a pipe smoker) had heart attacks and died in his late 60s; my paternal grandmother was crippled and eventually bedridden with rheumatoid arthritis. The eldest of their three sons had very bad asthma but died aged just 40 of leukaemia only a few weeks after diagnosis; my father speculated that the immune-suppressing medication taken by his brother for the asthma may have made him more vulnerable to the blood cancer (but this uncle of mine had also suffered a major trauma due to a workplace accident). The second son (pipe smoker and heavy drinker) had some asthma too (he used an inhaler), as well as an allergy to fish and severe eczema; he eventually needed oxygen cylinders and died aged 65. My father, the youngest of the three, was considered to have the best health (though he certainly had a rather violent temper); he died just a few months ago aged 87. My mother had dementia, as did her father (though his was probably of a different type and started at a much younger age); I understand that research is now suggesting possible links between dementia and inflammation - also between inflammation and mental illnesses (relevant to myself and other family members).
One of the great things about this forum is the links provided by members to reports of the latest research. I can only grasp a little of these highly technical papers but they have given me the sort of excitement about science that I used to feel as a child, adolescent, and young adult (leading me to attempt research myself, though in a different scientific field). It seems that the JaK2 mutation and others found in many MPNs (and other illnesses) are part of a vastly complex biochemical/genetic jigsaw that is now the subject of an explosion of research; learning how this jigsaw fits together promises to bring therapeutic advances and perhaps even ways to reduce the declines associated with ageing caused by the accumulation of genetic faults.
It appears that you have a very interesting mind...
Yes, there is always much more going on they we ever dreamt of Horatio...
Research and science might unlock so many interesting ideas into the future, and especially so where genetics are concerned... in my view...
Best wishes...
Steve
I am sure my mum had an MPN. When she was in her 80’s I found out she was taking chemo tablets. She brushed it off and said oh it’s just for my high platelets and the doctor said it would not take me out. She died age 89 of pneumonia. When we were helping dad clean up we found a cupboard full of paracetamol and dad comments - oh she ate those like sweets. She also used to get very tired so when I was diagnosed with prefibrotic Myelofibrosis age 67 I put two and two together - am sure she had it but more advanced.
I have insisted my children get their bloods checked. So far ok
Hey Kiwi Traveller...
Yes, it would seem that there might well be a connection there, in your family's genes etc... (?)
Fascinating just how many people are saying basically the same thing...
In any event, please take good care of yourself & loved ones...
Very best wishes
Steve
Hi I was diagnosed with ET Jak2 about 10 years ago. My mother who is 80 yes old just had a routine blood test for something else. They co texted her back to say her platelets were very high. After some more checks over the months she too has ET Jak2 .. when I me tioned it to my haematologist he said it just coincidence because it is hereditary
Some how I think it is
. Also my mother myself and my daughter all have familiarhypercholestrolism .
sorry predictive text. Should say the haematologist said it is not hereditary.
Hey Nixxx...
Hope you and yours are coping well at the present...
Yes, when I first started asking questions about the incidence of familial history, (not long after my own diagnosis 2016), I was also told the same thing, "That it is just a coincidence..."
However, since that time, a few new studies have been underway, and these responses from MPNers here continue to add weight to the likelihood that it is NOT a coincidence...
Always pays to try to keep an open mind, in my view...
Best wishes, stay safe & well ...
Steve
I definitely think there is something that's tells us its hereditary. My daughter is 24 and it makes me wonder if she should get tested. That would prove them all wrong. Take care stay safe
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