hello, i know a 24 year old girl who has recently been diagnosed with the same rare blood cancer as you and she has not had any exposure such as you have been subjected to, not much help i am afraid.

I wish you well on your journey

leslie

Hi Leslie thanks for replying to my post. I have read on different web sites that things like weed killers (roundup) & other DIY chemicals can also be possible causes which can trigger this. I have worked with different types of chemicals for the last 25 years with my work such as the mentioned ones that researchers believe can trigger this. I have also worked for over 10 years with a solvent called Methylene Chloride which was a known Carcinogenic and was banned from use in the UK. It is very interesting to find your friend has never been exposed to anything like this yet still been diagnosed with it. What did your friend actualy work as and was there any chemical factorys, Power Stations, LNG sites around the area were she lives or has she had any medical x-rays over the years.

Hello, we live in the north east of scotland in a rural area.  My friend worked for ASDA and has a horse.  Her ET was diagnosed 22 weeks into her pregnancy because her spleen had become extremely enlarged and her blood pressure was at a dangerous level.   Unfortunately in order to save her life she had to have her pregnancy terminated.  In a way becoming pregnant saved her life as she has varicose veins in her stomach and near her portal vein and had she fallen off her horse or something similar she would have bled to death.  It is so so sad for her as she is very young.  I have no doubt that prolonged exposure to dangerous chemicals must have some impact.  I really cannot offer you any real information but when i was llooking up this cancer I did find a site where people in a similar situation posted.  Cannot remember what it was called by my initial search was Essential Thrombocythemia.  I expect you have researched extensively though.  Wishing you well.

leslie

Hi Leslie I am so sorry to here about your friends loss and hope she makes good recovery. I have looked at lots of different sites and there is lots of different answers which tells me there is no definate known cure at this moment in time and its just a case of testing different medications and try to keep the illness stable. They have me on Hydroxycarbamide tablets along with a type of asprin. There is some side effects like fatigue, light headed as if my head was numb and heavy pains to my left shoulder and neck which will not go away but not sure if its these tablets which are actually making them worse as i have suffered with the same symtoms for a good few years now only they seem to be getting stronger. The reason i have been having symptoms so long is because they have known since 2008 that i have had a high Platlet count which they are trying to get down now and never told me this until thet diagnosed me with ET. Thank you for your response and take care.

Hi mycancerconcern1, 

I know you were hoping to connect with others with this diagnosis so I just wanted to stop by and put you in touch with [@eashmore]‍, [@jacquied]‍ and [@JanetRH]‍. They all have essential thrombocythaemia and now that I've mentioned them in this post I'm sure they'll pop by when they can to say hello and share their experiences with you.

I can see you've been doing some research in to this so I thought I'd share the information we have about it on our website for you to have a look at as well. If you have any questions do feel free to give our cancer nurses a call. Their lines are open Monday - Friday between 9a.m - 5p.m on 0808 800 4040.

Kind regards, 

Steph, Cancer Chat Moderator

Hi, I received my diagnosis of ET with the jak2 mutation only 3 days ago! The consultant never even mentioned the 'C' word. He was very vague in his explanations of this condition....It's fair to say that after doing a little research, I was kind of freaked out a little! I'm not due back at the hospital for another 3 wks. I don't know where to go or who to ask about my diagnosis and how this is going to affect me. 

All your stories and journeys will be a massive help. Thank you 

lennie1980 

Hello All,

I was diagnosed with ET about 3 years ago I do not have the JAK2 Gene, I am 65 years old and up to the diagnosis I had been very healthy and do not smoke.

My friend who does not live too far from me also has it and she is also, like myself slim , a healthy eater and a non smoker. The concern we have is that after Chernobyl we were both out in the heavy rainfall that hit the West coast of Britain. Does anyone know of any research into the effect on humans in this circumstace? The sheep in North Wales were not fit for consumption for many years after this toxic rain fell in the area.

Ann

Hallo all,

I don't understand why you are all looking for special environmental causes of your ET.  I have it too, because of a CALR mutation, but mutations can happen to anyone's genes anytime can they not?  They're more probable later in iife, as in my case, but presumably that's because the longer you're around the more chances there are.  I was out of doors the day after Chernobyl too, in Glasgow, but that is an awfully long time ago and it never occurred to me to look for a reason like that when I got the ET diagnosis this summer. 

I certainly don't mean to rule out environmental causes. Many years ago I knew 2 farmers who died of cancer of the throat and lungs respectively and I've always wondered if breathing in the fearsome chemicals they were using in the fields in those days could have caused it.  However, I read a lot of history and biographies and find that cancer has always been around throughout  history and hitting people much younger than me so I've been feeling quite lucky to have lasted this long without it!  And very lucky indeed (so far) to have escaped a much worse kind.

It's great to find other ETers in this forum and hope someone will reply to this post even if only to disagree.

Hi jdog

I was diagnosed 3 years past in May after a visit to the hospital for a bowel condition. Blood test came back showing a high platelet count which at the time I hadn't a clue what it meant ? Got another blood test at my doctors to confirm it. He referred me to the hospital for more tests. They first thought it was my spleen and then they sent me same day for a bone marrow test. Which kind of freaked me out. Result came back showing my bone marrow over producing platelets in my blood.

I was then put on aspirin right away and prescribed hydroxycarbomide (no sure is spelled right?lol) Was on that for a bit until the side effects started kicking in. Serious headaches and chest pains! Blue light hospital couple of times thinking heart attack. All ok but was took off hydroxycarbomide and then went cold turkey for a week. I am now on interferon alpha which is an injection every 2 days. Been on it 2 years come March and it's been fine.

I also have protein in my blood which they say effects joints? 

Only real problems I have had in the 3 and a half years is excruciating pain in both my ankle accillies which has now settled with shoe inserts and exercising . I was 45 when diagnosed which they said was really young to have but hey I feel lucky because I can still work and have a life unlike some unfortunate people so I just stay positive . 

Great to see a forum discussing ET

keep well ..........

Hi Kobe1kinobe,

Many thanks for your message, it's really good to know there are people out there to talk to about this.  After all, most people haven't a clue about ET and hopefully never will.  Goodness knows what the future holds, but I'm old enough to feel unnaturally lucky, compared to what  has happened to others so much younger than me.  Two days ago I got a response from a man your age whose life has been absolutely devastated by ET and the dreadful (and unusual), complication he is barely surviving with now.  Thank goodness you are OK.

It's discouraging that your hydroxycarbamide side-effects kicked in after a honeymoon period;  I've had none so far and have been hoping I'm clear, though the whole business appals me - the fact that in order to ward off one danger I'm recklessly attacking the immune system that protects me from everything else.  The literature that comes with the drug is so scary, too;  have I more to fear from the treatment than from the disease?  Then I look at the alternative, especially the possibility of being long-term disabled by strokes and ruining someone else's life as a result . . .

Philosophically speaking, once you know you have ET then there's no 'do nothing' option; simply not taking the treatment is making a choice - between one risk or the other.

I'm sorry to hear about your ankles.  Is the problem known to be linked to ET?   I ask because when I broke my ankle back in January it was distinctly slow-healing - and lo and behold, this could be the effect of ET.  I discovered that a research group in Turkey have found a strong correlation between slow healing of fractures and unusually large median size of platelets. Young platelets are larger (presumably they shrivel up, a bit like us, as they get older!) and we are producing so many young ones all the time that we fit the bill.  When I told the haematologist about this research she said that some of my platelets were 'HUGE' (her word), under the microscope.  The orthopaedic guy was interested in the research too, so I think it's worthwhile to keep looking for more and more ET info, as we are doing by exchanging our news, and passing it on.

The protein you have which affects joints . . . I wonder if this could be a factor with me too.  I have arthritis and have been so puzzled by recent changes - peculiar ups and downs in stiffness and pain, plus new joints in trouble - that I've actually been wondering about a link to ET.  Or to the drug. 

My own most personal ET problem is pruritis - crazy itching which in my experience is sometimes linked to what they call 'restless leg syndrome'.

Thanks again for your message.  Keep well and take care!