Hi guys!
I am feeling anxious tonight. I have some question for you. Is it anybody Who has ET with CALR and had it for a long time and not progressed to MF?
You guys who has MF and CALR, for how long have you had it?
Im getting my first bmb in july. Right now i am CALR ET, my blood shows platelets around 900, slightly high LDH. Only on aspirin.
Hello. I was diagnosed with CALR ET around age 27 and most likely had it longer than that. It's been 17 years and I still don't require treatment. My numbers aren't as high as yours though. I'm only barely out of range and my numbers really haven't risen much in those 17 years. I do deal with symptoms though like fatigue and joint and bone pain. My BMB was inconclusive.
From what I remember reading about MF in CALR patients is even though we are more likely to transform to MF than JAK2 patients the MF in CALR patients is usually less severe. So that's the good news. We are also less likely to get a clot. I hope everything goes well at your appointment and if I have one piece of advice it is: you are not your diagnosis. I used to think about my ET all the time but recently I barely even think about it. I just live my life. It took me a long time to get to that point but I wish I had done it sooner. ❤
I was diagnosed in February 2008 and have been on Hydroxycarbamide ever since diagnosis. I’m ok, no MF yet. My advice is stop worrying and just live and enjoy your life.
HiI was diagnosed with Calr ET 10yrs ago which was confirmed with a BMB. Like everyone else I don't know how long I'd had ET prior to diagnosis. I started on interferon & now take pegylated interferon. No MF issues & living life to the full.
Sending my best wishes.
Had ET calr for 25 years nearly told I was progressing to mf 5 years ago, today I feel better than ever still get tired now and then but no where near as in past being tried on all sorts of drugs, now on just jakafi and aspirin. I would not sit around worrying about MF, I did for years and all it does is make you more ill. Stop listening to intently on everything the doctors say and just live life like normal, this plandemic has helped me without knowing, as lack of hospital visits and constantly being told you ill with a rare and complicated dis ease do not help overall health as the mind generates alot of our sickness.
It was nearly 3 years ago guys wanted me to start the bone marrow transplant, so glad I refused it, esp now knowing I am OK still without it,trust your own instincts and just live life as normal as for an exact answer to your question I really don't know whether I have transformed or not and I don't believe they do either or I would be very ill by now.
Take it easy
Nick
👏👏👏 well said Rastavapa, life is for living and enjoying every day and not the worried sick who let it dominate every part of their lives and yes trust your own instincts. Tina.
Hi there, I was officially diagnosed with CALR ET more than 10 years ago (though blood work indicated it some years before), since then platelets have hovered around 1 mil mark, taking only aspirin all this time, fortunately no progression and no other issues or symptoms whatsoever... As others have said, we just have to live our lives fully.
Thank you ⭐ this forum is amazing. I hope you all are doing well. Let me know if i can help you guys with anything.
Gooday Johan...
My name is Steve, and it was a particularly beautiful sunny day for cycling here in Sydney today... 
Johan, firstly I have Post ET / MF CALR+ w/ ASXL1+ & Acquired Von Willebrands Syndrome (VWS). Originally diagnosed in mid 2016 as ET, & w/in a couple of months later that changed
to Post ET / MF because my BMB showed a high Grade2 level of fibrosis.
Secondly buddy, (we all of us MPNers), we are all unique and while we may share an MPN of the same name, same or similar treatments, even be the same gender & ages, "Our MPN can & will be most likely a very different experience for each of us", simply because so many 'Variables' are possible & probable too...
Johan, I am guessing that if you are only taking Aspirin (Low-dose 100mg daily) at the present, that you are most likely on the south side of 50yo, is that correct ?
Generally speaking only of course, Aspirin is the standard protocol for people like us w/ a very high Blood Platelet regime, & under 50 yo...
My Platelets are always very high, and some time back now I started taking Ruxolitinib (Jakavi), which has really helped me immensely... I went from living inside one of the worst types of mental fog, to almost retrieving my old sense of self once more... almost.. 
My slightly enlarged spleen returned to normal, (most of the time), some of my many symptoms would ease, (& sometimes return... bit of a roller-coaster at times). But much better than the previous alternative I can assure you...
High blood platelets are & can be a real worry, hence, it is vital that you are seeing a good MPN Specialist, who knows how to treat people with ET, as opposed to just a Haematologist etc... It is very much a field of Specialisation...
However, & as ClubDino has already commented, having CALR+ does not mean that you will become MF either, the risks are generally quite small really so try to remain positive to begin w/ because MPNs are 'Chronic' illnesses, and that just means that people tend to have them for a really long time... so do try not to become too overwhelmed at your diagnosis... I know saying & doing that right now will seem most difficult...
Even if you are found to be pre-fibrotic MF, as a result of your BMB, it's still not assured that you are progressing rapidly... Quite the converse is generally expectant of CALR+ patients, so please do try to always remain positive, difficult at first that might be... but it does become easier. Just try to be patient w/ yourself & others too... For many have no idea what ET is, let alone the other MPNs...
I mentioned the cycling above, because I have learned through trying to understand my MPN, that inflammation plays a large role in all types of Cancers. Hence, I changed my lifestyle, decided to alter my diet, and took up cycling for my new exercise regime, circa Four (4) years ago...
Many here are likely tired of my talking about my cycling efforts, however, I have recently returned from doing an epic MPN Fundraising & Awareness cycling adventure, where I rode just over 600km in Five (5) days...
Here's a link, scroll down to see the documented montage of this cycling event:
Johan, I will turn 62 in a few weeks, and I am not planning on going anywheres soon...
Hang in there buddy, I promise you that it does become easier to manage over time...
Best wishes, stay safe & well...
Steve
Thank you Steve. Your story is amazing. Yes i am in my late 30's. I will try to stay positive, sometimes it is just overwhelming. I really appriciate your answer, i hope you are doing well. ⭐
Hello Johan,I've been following this site for quite sometime and this is my first time time responding. Thank you to everyone for the abundance of information and kindness re: our rare disease.
Johan, I am Et and Cal - r as well and am only taking baby aspirin. I have extremely high levels, around 1,200,000, and they have been that way for years. I feel fine with the exception of mild fatigue, which I have always had, and occasional leg and shoulder pain, which could be related to something else, such as arthritis, etc. I strongly agree with socrates 8 that our MPN's are different for each of us. I am 56 and have been living with high levels for at least 10 years that I know of. My specialist believes, - "not to fix it, until you feel you can not function or are in pain". I feel, more or less, the same way I have felt my whole life.
In addition, I eat healthy and exercise every day, with the exception of active rest days☺.
Best of luck to you. Our disease is overwhelming. It gets easier over time to live with, and it just becomes part of our life.
Best wishes and stay healthy,
Gina
Thank you ⭐
Interesting you live with such high levels and no side effects. I'm at 1.2 million right now and deal with dizziness and fatigue. But not sure if it's high platelets or the medicaiton. Do your numbers stop at 1.2? They never go up? I tried going off everything (besides aspirin) a couple of years ago and went up to 1.8 million.
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