Is there anyone out there to talk about ET experience, doubts and futures?
I was diagnosed this summer but I've probably had it at least 2 years since bleeding symptoms first attracted attention.
I'm a CALR mutation and taking hydroxycarbamide/hydroxyurea.
I find researching it really interesting and so is the way I find myself thinking about my new situation.
Hi. I don’t have ET, so I can’t help from my own exoerience, but welcome to the forum. Lots of friendly helpful people, and Maz our moderator can find you a buddy if you’d like. The treatment if MPNs is changing fast, so while its never much fun being diagnosed with an MPN of any sort, now is a better time than it had ever been: lots of research going on. Keep in touch.
Rachel
Hey Jdogs... :-0)
Welcome to our rather exclusive little club of rare, and important people, with an MPN...
Originally, I was diagnosed as CALR+ (Type2) ET, and then later reclassified to MF after closer scrutiny etc...
Hopefully, I might be able to offer a few answers, and you can be sure that there are a great many other MPNers here who will be only too happy to assist you in this part of your journey.
Maz, who Rachel mentioned above, is the website co-ordinator, (& much, much more of course), and she has oodles of MPN literature available should you so desire...
Maz, has also been taking HU for quite some time and only has good reports concerning its use...
Everyone here is most empathetic and compassionate, so don't be afraid to ask questions, as we have all been where you are right now...
Best wishes 
Steve
(Sydney)
Hii my wife got et with type 2 calr mutation and heard it might develop into mylofibrosis. Is there any treatment for mylofibrosis. I heard survival is difficult. Can you share your thoughts
Hey Aruntez...
Happy to share what I can concerning my own experiences...
However, please remember that there are a couple of very important aspects that must be considered:
1. First, I too am just another MPN patient, and not medically trained for anything other than simple First Aid...
2. While all of us here do our best to aid one another better understand & come to terms with the MPN conditions, one should NOT overly generalise because there are simply far too many variables, and therefore... it is quite likely that no two MPNers would be quite alike at all... We are all rather unique in most cases...,
in my view...
Aruntez, part of the reason why that many of us are often overwhelmed by our MPN, (irrespective of what flavour...), is because the 'DRIVER' mutations thought responsible for causing them are relatively only recent understandings when it comes to MPNs, and many doctors are still a tad alien to MPNs...
Essentially, there are currently only Three (3) known 'DRIVER' mutations, and they were uncovered starting from 2005 (JAK2), 2005-6 (MPL), & CALR Types 1 & 2 (from 2013), however it is believed that there are possibly in excess of 50 Types of CALR mutations, (so far...).
Hence, as you can see, the learning curve about MPNs has really only recently begun, and yet, in such a short interval much has already been gleaned...
Nevertheless, and as I mentioned, there are so many different variables some of which might be:
Age, gender, ethnicity, blood type, environment, a person's genetic make-up... just to name a few...
There are also other High Risk (HR) mutations that can add to the mix...
One can learn more about what other gene mutations they might have by undergoing a gene panel test, which I believe currently scans for up to 28 other genetic mutations... Each of those HR mutations and their impacts also depend on a great many other variables, for example whether or not they are isolated or in combination with other HRs etc...
However, and this is REALLY IMPORTANT... So please remember this!
Myeloproliferative Neoplasms (MPNs), are all considered to be quite rare, and the statistics that most of the scientific community divulges suggests something in the vicinity of the following:
* Essential Thrombocythaemia (ET) is an MPN that primarily concerns having problems w/ far too many Blood Platelets (Thrombocytes)
(1.8 - 2.2% in every 100,000 people)
* Polycythaemia Rubra Vera (PV), is a condition mainly associated with problems with Red Blood Cells (RBCs) abundance, (Erythrocytes)
(1.6 - 2.0% in every 100,000 people)
* Primary & Secondary Myelofibrosis (MF), can have a combination, and even affect levels in all three blood compositions; Red, White & Platelets too...
(1.0 - 1.6% in every 100,000 people)
Please do not quote me, for as I keep repeating, there are too many variables at play here to be even close to being precise etc...
The next REALLY IMPORTANT... Issue to consider is this!
1. Only about 10% of people with ET ... might develop into MF; or put in reverse...
90% of people with ET will NOT develop into MF! These are great odds really...
2. Only 10-15% of people w/ PV... might develop into MF; or again, in reverse...
85-90% of people with PV will NOT develop into MF! Again still great odds ...
3. People w/ MF similarly have reasonably good odds too – 20% might develop into Acute Myeloid Leukaemia (AML) , but circa 80% will NOT!
Therefore, and as you can see from this brief Post... There is a great deal to learn and so much to come to terms with...
But also every reason to believe that your wife will have the odds in her favour too... 
Friendly advice:
Find a really good learned MPN Specialist, one who understands and is empathetic in disposition. That relationship is likely to be a long one hence, people must be able to have clear lines of communication... and if for any reason one is unhappy with their Specialist, waste no time and seek another opnion... It is important your wife should be comfortable with her medical consultants, in my view...
DIETARY REGIME & Exercise:
Cannot be understated just how very important both of these aspects have been in my journey...
In my experience, it took me a good year to get my head around most of this... At first, quite overwhelming! After that year, I became most serious about extending my own longevity as best I may...
Diet & exercise have seen a slight improvement in my MPN condition.
I am Post ET/ MF. CALR+ Type2, Von Willebrands Syndrome Type2 (acquired?), HR Mutation ASXL1+.
My first Bone Marrow Biopsy (BMB) on a scale from 0-3, and I was Grade2. However, my last BMB saw a slight but significant molecular reversal back to Grade1... YAY!
Remaining positive is also essential...
Don't waste time and energy with Dr GOOGLE... If you want to learn more about your wife's MPN, seek out good medical journals...
And get to know the people here on MPN Voice... They're all great people, and Maz the Co-ordinator of the website can also provide you with some very useful literature ... just ask her...
Best wishes Aruntez
Steve
(Sydney)
Hi jdogs &welcome to the forum. You will find plenty of people on the site with their own experiences of living with an mpn. They too would have had the same fear & doubts when first diagnosed. I can also say you willcertainly still have a future as their are plenty of people on the forum who have had an mpn for years and have led a normal life. Unfortunately some of us have experienced problems like bleeds & some have unfortunately had more serious problems like strokes,me included. I have etjak2 mutation and have had it going on 11 years. Take hydrea & clopidogrel amongst other medications for it. I'm sure you will hear from many people on here who have had different experiences of living with an mpn. Atb,tina.🤗
I was diagnosed with ET at 60 during a routine checkup. Platelets were 800. I was put on 1000mg day of Hydra. No side effects and felt same as always for 13 years. Year 14 found me turning red and itching. My doc did a BMB and said I now also have PV. I have been getting phlebotomy's about every 8 weeks and was doing well. The hydera started causing mouth sores so I went on Jakafi. 2 weeks on Jakafi and now my doc thinks I have leukemia.
When I was first diagnosed I read on a Mayo site that the average life expectancy was 10-15 years. That appears to be true for me.
Planting
Hi. I was diagnosed with ETjak2 18 months ago having just lost my husband. I had never heard of it. There is plenty of info here....remember that people mostly live near normal lives . I try to get on with it and take the medication because as I have found we are not completely in control of our lives and other things can happen. Main side effect is tiredness but it's not debilitating. I try to eat well and keep as fit as I can.....not easy with a snapped meniscus on my knee. Good luck and remember it could always be something worse
Planting
Ive just had surgery for that. Are you planning to?
it's a possibility. Had an injection which helped but didn't cure so it's definitely a possibility. Did you have any problems?
No still having physio. I was advised not to have injection. My philosophy is that the debri s is trapped within the synovical capsule. It’s never going to come out or disappear without intervention . My advice is have it done. In some cases they can repair it. It won’t do it but itself. It all depends on circumstances age etc.
I've had meniscus repair on both knees in 2003 and 2005. Worked very well.
Hi Jdogs and welcome to the site.
I was diagnosed with ET in 1999, at age 19. I am also CALR positive, on interferon therapy for 15 years, before that I was on Hydroxy.
I was diagnosed following a blood clot in my left leg, platelets were 1100 at the time, and I was put on Hydrea because it was necessary to bring platelets number down as soon as possible, but later I became resistant to it and switched to interferon. I never had another thrombotic event since then and have been fortunate my ET didn't progress to some other form of MPN.
I feel and look as if I'm completely healthy, only when you look at my CBC you see something is wrong. I graduated from university, got a job, got fired, found another job...,all in all live a normal life just like anybody else. My only complaint would be fatigue, and it's in the form that knocks me down completely. It happens when I don't drink enough water, so I try to have a bottle of water with me at all times.
If you have any questions feel free to ask, I will do my best to help.
Best wishes,
Zlata
Hii is your calr positive type 1 or type 2
I don't know, the doctor only said CALR, and I supposed they don't do type automatically, but recently I read somewhere that it is done automatically and decided to ask next time I go for check up.
Hello Jdogs, welcome to our forum, as you can see the lovely people on here are very helpful and friendly, so I hope that it will help you to be a member of this forum. As Rachel and Steve have said, I can send you information booklets and details about having a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication and can give you help, support and advice, our medical teams are very good at looking after us but they don't understand what it is like to live with a MPN every day and the impact that it can have on us, if you would like any information please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
When I was diagnosed with ET JAK2+ in November '16 I became very interested in health care, it occupies my mind all the time and I look for books published by the alternative health care sector. I try most things because I believe there is a cure for MPNs out there somewhere. I am healthier and feel better than for a long time. I was 16st, now about 12st and I started running. So your diagnosis of ET could be a blessing in disguise. In the London Forum in November Prof Harrison mentioned something that she has an MPN patient who is 100 years old.
Well done you! I was 17 when diagnosed with ET and now 52 and still very healthy and well! I have known Prof Harrison most of my adult life and she’s been amazing in my care along with MPN who have provided so much support! So I’m proof that you can live with ET !! Keeping healthy is key so keep going!!!
So you have had ET for 35 years. What was is like then, there was not so much information available as there is now? I found the lack of information most frustrating. If I had something quite common, like diabetes or heart problems, there would be lots of information available. It seems that the newly diagnosed with MPN have this problem, they are scared because of the lack of information. I have been aware of my ET for 2 years now and I am getting my head around it and becoming settled.
When I was diagnosed in 1984 there was NO information on ET and what little information there was there was a very poor prognosis and at 17 years of age I felt that my life had been destroyed! The information on Hydrocarbamide was also very distressing with prognosis of leukaemia being quite high on the list of side effects. Thankfully research on Hydrocarbamide has shown the long term use now as more positive with a small incidence of turning into MF or leukaemia. I hope my story gives others with ET hope.
Don’t feel scared there is life after ET! I have lived with ET over 30 years now and most of it on HYdroxurea and still am fit and well. MPN is great and Maz can get you in touch with a buddy should you want to chat on a one to one basis.
You’ve come to the right place. I was diagnosed just over 3 years ago. I too have ET Calr. I’m 63 years old. Feel free to ask anything you like. You’ll get loads of info from this site. Take care.
Thanks for very positive replies. Cheered me up! How do you get a buddy in the UK. I live in Bury.
Hi Planting - You just contact Maz, the administrator of this site, and she’ll put things in motion to connect you with an MPN “buddy”.
Hi MY ET was diagnosed about 2 years ago and I'm on Hydroxycarbomide. I started a Dr referral gym scheme as I didn't want the condition to define me.
Hi Jdogs. My 32 old daughter has been diagnosed with ET and the CALR mutation. Her platelets have been rising and are currently around the 1300 level. The haematologist (Brisbane) was suggesting HU so we did some reading which we put in front of him. The two most interesting articles I found are:
nature.com/articles/s41408-...
It was on the basis of this paper that the haematologist agreed that my daughter should not take HU but rather be observed on a 3 monthly basis. She is on a low dose aspirin (100mg) every other day.
More recently I found this paper:
ncbi.nlm.nih.gov/pmc/articl...
The line in the abstract which interested me is:
In conclusion, in patients with low-risk, CALR-mutated essential thrombocythemia, low-dose aspirin does not reduce the risk of thrombosis and may increase the risk of bleeding. (quote is final sentence of the abstract)
Given that you enjoy researching, you may find these papers interesting albeit pretty academic. The haematologist acknowledged that the lead author of the first paper is a world leader in the field and he was happy to follow the guidelines.
TrishC (Australia)
Hi Jdogs. My 32 old daughter has been diagnosed with ET and the CALR mutation. Her platelets have been rising and are currently around the 1300 level. The haematologist (Brisbane) was suggesting HU so we did some reading which we put in front of him. The two most interesting articles I found are:
nature.com/articles/s41408-...
It was on the basis of this paper that the haematologist agreed that my daughter should not take HU but rather be observed on a 3 monthly basis. She is on a low dose aspirin (100mg) every other day.
More recently I found this paper:
ncbi.nlm.nih.gov/pmc/articl...
The line in the abstract which interested me is:
In conclusion, in patients with low-risk, CALR-mutated essential thrombocythemia, low-dose aspirin does not reduce the risk of thrombosis and may increase the risk of bleeding. (quote is final sentence of the abstract)
Given that you enjoy researching, you may find these papers interesting albeit pretty academic. The haematologist acknowledged that the lead author of the first paper is a world leader in the field and he was happy to follow the guidelines.
TrishC (Australia)
Hi, jdogs, welcome to our forum. As you can see, we are a very caring and supportive group. I was diagnosed at age 52 in 2008 with ET Jak 2 with platelets at around 600. I’ve been taking hydrea, on and off, ever since. Around 2016, my doctor said I had progressed to PV and put me on Jakafi. By 2018, my platelets kept rising, but my hemaglobin kept decreasing. I felt extremely weak and had severe brain fog, so I found an mpn specialist, who did a BMB (my 2nd), and told me I had post ET MF. She took me off Jakafi and put me on EPO injections, hydrea, and a new medication called fedratinib. That was a year ago and I’m feeling much better now.
Good luck on your mpn journey.
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