CALR2+

[Sabramcq]

Spent the morning weeping over my positive results. My appointment with my hematologist isn’t for another two weeks but I’ve seen my results in my patient portal. I have the CALR2 mutation. Does anyone know what this is? My platelet count is 520. I’m absolutely terrified. Please.

[Hidden]

Hi I was diagnosed in 2015 with ET with the same mutation as you. That is what CALR is My Haematologist told me at the time if you are going to have a mutation this is the best one to have. My platelets at the time were 70o, slightly higher than yours. I was already in baby aspirin to help prevent your platelets clotting. I am now 68 and still working as a nurse, 4days a week. So as you can see you can live a pretty normal life. I have no symptoms of this disease, and still wouldnt no if I hadn't had a routine blood test. I have blood tests every 6 months and see a Haematologist yearly. Dont give up hope. Lyn x NZ

[Sabramcq in reply to Hidden]

Thank you for responding so quickly. I am just waiting now to see what the hematologist says about this. Reading the journals is scary. Thanks Lyn. I don’t know what to say. I’m numb. I’m glad you are doing so well.

[Hidden in reply to Sabramcq]

Good luck with your visit to your Hematologist, You look way younger them me so there is lots more options for you. I have not yet to go on chemo medication due to my platelet count and no symptoms. If things change I will certainly re visit my decision. Are you in the UK? I know you are having a terrible time with Covid-19. We are doing well here in NZ. Only 24 cases left with symptoms and no one in hospital!!

[Sabramcq in reply to Hidden]

I’m in the US.

[Paul_1971]

Hi,

I know its scary, I have the Jak2 mutation and felt the same. I know its easy to say but the fact the 'source' of your ET has been located is a positive one in some respects. Now they know whats causing it that can help when they are managing your condition.

Had it proven negative you may have had to undergo more tests to see if there was something else going on.

I don't know if you are having any more issues than the elevated platelets. But 520 while higher than it should be, provided you are otherwise in good health should mean you don't need any medication other than something like aspirin to help prevent against clotting.

Many people have ET and remain at a similar count, it does not mean its going to keep increasing. And the good thing is now they know what they are dealing with they will monitor should any changes happen.

Im not trying to play it down of course its scary and a significant diagnosis, but well managed most people with ET go on to have full productive lives.

All the best and good luck for your appointment with your consultant

Paul

[socrates_8]

Hey Sabra...

Welcome to the rather exclusive & very chic MPN Club...

You are in really good company here...

Of course there's a great deal to take in, and you might need to learn how to be patient w/ yourself, & others, as you start your journey...

Firstly, allow me to introduce myself. I am Steve from Sydney, Australia, (the MPN Club knows no boundaries...)

I also started out w/ ET & a higher Platelet regime, (4 years ago now), and I would like to suggest that I am possibly healthier now than I was when I commenced my journey just by adding a few simple 'Life-style' changes...

I am also CALR+ Type 2, (which usually just means a slightly higher Platelet regime is what we MUST keep our eyes on. It really does pay to become our own best advocates too...

No-one will care more for you than you can yourself, in my view...

With MPNs Sabra, there are these things you will eventually learn about called mutations, and there are a few different types of mutations. However, the ones that are thought to have caused our MPN problems, are referred to as 'Driver' mutations:

1. JAK2

2. MPL

3. CALR - types 1 & 2

These above are the best known, however, there are many others that are not so common, but those three above account for most of the 'Drivers', as I understand things in any event...

The sometimes also reported 'Good News', is that... if there could be a choice of preferred 'Driver' mutations, often CALR is believed to be the best one on a number of fronts...

Firstly, CALR is supposed to mean less likelihood of having a thrombotic event, (however in my own case that has not been completely true, as I have had two (2)), but both of them were sometime ago now...

Secondly, there are a few research programmes out there that are hoping to create a specific type of vaccine style cure for people with the CALR type Driver mutation... So keep those fingers crossed...

Thirdly Sabra, if your photograph is relatively recent, (you appear quite young), and should you indeed be diagnosed w/ Essential Thrombocythaemia (ET), you may find that all you will only be taking is 'Low-Dose' Enteric-coated Aspirin, at least until you are older than 55 yo.

Most MPN specialists are usually loathe to start a younger person on anything more than Aspirin, in the first instance... (invariably)

There is plenty of information out there about MPNs ( & ET), and it is worth reading up and edifying yourself as much as you can, and you will inevitably come to the conclusion, that living an almost entirely normal life is still very much an option for you... These conditions can be relatively easily managed, in most cases today...

Here's a link from our Australian MPN FORUM 'MATES', for an MPN & ET description:

mpn-mate.com/mpns-what-are-...

However, Maz is the coordinator here on MPN Voice and I am sure she, and many others will all chime in to assist you in no time...

Try to stay calm and centred, there's a lot to learn but mostly, you are in very good hands here, as you will soon no doubt learn for yourself...

Best wishes

Steve

[lizzziep]

Hi, it does seem scary at first. I thought I would at least grow another head or possibly glow in the dark, that's if I lived more than a week. I made the mistake of asking Doctor Google about ET - the majority of the info I got was WRONG! The best place for info is your haematologist and this site. Any questions ASK, somebody here will know the answer or have asked it before. No question is too silly. My first thought was can I still dye my hair! I was diagnosed nearly 10 years ago, I still wouldn't know I had ET if I hadn't had a random blood test. 520 isn't that high for ET, mine's been more than double that. However at the moment my platelets are in normal levels. ET is a blood cancer, but if you're going to have a cancer it's a "good" one to get. It doesn't go anywhere else and life expectancy is normal. It's easy to say don't worry, we all have something to worry about, but listen to your doctor, try to eat healthily and stay hydrated. I'm on Anagrelide, the drugs do have their side effects but we're all still here!! Sending a virtual hug! X

[Mazcd Partner MPNVoice]

hello Sabramcq, and welcome to our forum. We all understand how you are feeling at the moment, it is very scary and frightening when you are waiting for test results and then waiting to be seen by your haematologist to have it all explained to you, so I am hoping that by being on this forum you will find some help, support and comfort from us all.

I would suggest that you have a look at our website mpnvoice.org.uk/ there is a lot of information on there about ET, medications, symptoms, etc, and also read some of the real stories, I am sure they will help you understand more about ET.

It might also help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and can give you help, support and advice from the perspective of someone who really does understand how you are feeling and what you are going through. If you would like to have the details then please email me at [e-mail] and I can send you the information.

Just remember that we are here to help and support you. Best wishes, Maz

[Sabramcq in reply to Mazcd]

I sense the support already, Maz. I just put myself out there and I received a lot of balanced support with good information, although the WIKI on CALR is way above my understanding. I think CALR is such a recent discovery that there really hasn’t been enough sampling precision/confidence to predict the degree that any individual may be affected. I am already grateful for your investment in the lives of this family. Your Sis, Sabra

[tracey13]

Try not to worry too much as medication has come a long way now and this can be managed.

My husband has myelofibrosis we were devestated he's on good medication now and has a normal life works full time he's 48 this year.

When you Google things it scares the hell out of you . This site is amazing all the people on here understand what you are going through. This is a great supportive group.

Take care and stay strong

Tracey

[Sabramcq in reply to tracey13]

Thanks so much Tracey.

[tracey13 in reply to Sabramcq]

Your very welcome.

The members on this site really helped settle my mind .

We don't read up on MF no more all my husband's bloods are in range so as long as they stay this way we try not to worry.

He does suffer anxiety and stress this pandemic just isn't helping people's state of mind.

He got a phone call last Friday from the NHS telling hi he has to shield bit late now almost 10 weeks since lock down.

His consultant said he was ok and just stay safe .

[hunter5582]

Welcome to the club noone wanted to join, but we are all glad to be a part of. Sorry to hear you had to join our club, but you will always find support and information you need here.

I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I have the JAK2 v617f mutation. I have never had a single incident of thrombosis, only minor hemorrhage, and mild splenomegaly. It is actually the secondary symptoms related to systemic inflammation that have been more problematic. My own situation of more complex in that I also have another gene mutation - Neurofibromatosis type 1. This combination has certainly provided me with some challenges and interesting learning opportunities; however, I have had a great life. I still do. At age 64 - I am still alive and kicking and having a fine time.

Your level of thrombocytosis is relatively low. You have heard a bit about the calreticulin (CALR) mutation and what is may mean. We all react differently to finding out something like this. For me, I find that knowledge is power. Feeling disempowered or helpless is pretty normal initially and quite difficult to manage. it can be very scary to just randomly look around the Internet, but it is important to provide yourself a base of knowledge. The Voices of MPN website that Mazcd referred you to is a great resource. Here are a couple of things you might find helpful.

ghr.nlm.nih.gov/gene/CALR#c...

jwatch.org/na33026/2014/01/...

en.wikipedia.org/wiki/Calre...

Some of this requires a medical dictionary to understand. If you decide to go with the knowledge is power approach, just give yourself time to absorb it all. You will have plenty of time to learn it. If you decide to go with the put it aside for now approach - that is fine too. You should do what works for you.

I closing, please know that you can anticipate plenty of time to learn to deal with what the CALR mutation will mean for you. While feeling terrified is a normal reaction, "Fear is the mind killer" (Frank Herbert). There will be some things you need to learn to manage the impact of the CALR mutation, but it certainly can be done. Also know that you are not alone with this unless you choose to be. The support system you set up for yourself will be important. Please keep coming back here as the members of this forum can be an important part of your support.

All the best to you. Hang in there!

[Sabramcq in reply to hunter5582]

Yes. I did not want to be in this club. For sure. I do need information, and I believe that your voice and experience is important. I can never get good balance by just looking at the raw information; I much prefer real people, especially those who are 30 years ahead of me saying that they are making it. Thanks for the links. I will face my fear. It will pass through me.

[wotan10]

Greetings from Fleetwood England.

I was diagnosed 3years ago with ET and no frilly bits.

I am 67 female, my platelets are 312 just this week and feeling well.

I walk 3 miles per day at present to keep fit.

When not on lock down I do gym three times a week and have a keep fit boxing session once a week..

My life is ok and it helps to keep positive. My drug regeim is 2 hydroxicarbinide per day with a baby aspirin 75mgs.

My life is good at the moment and I am boosted by this safe space where their is always some one to talk to if you feel wobbly.

Take care and keep safe.

[Sabramcq in reply to wotan10]

Thank you for your reply. Sounds like you’re really committed to your routine. I definitely need to get a routine. I’ve been bicycling 10k but am on and off. I’ve been reading about hydroxi so would appreciate learning about your experience with ionic it is prescribed.

[Scrollernut]

Just diagnosed with ET and Jak2 positive about 3 months ago. Went through the same emotions. Saw results before seeing doctor and teared up every time I talked about it. Petrified. Been on hydrea , 500 mg a day plus aspirin. First blood test showed numbers down to normal already. Going for second test next week to see if they’re still down. Will be on meds forever to control numbers. I can deal with that. So much better than some cancers. We can live pretty much a normal life span. Good luck, hang in there and keep in touch.

[Sabramcq in reply to Scrollernut]

Thank you for your reply. Not only is your medicine working but by lowering your platelets, you have less risk from thrombosis. At least that’s what I’ve been reading today. I will keep in touch.

[Doggy1903]

Its very frightening at first but this wonderful forum is so supportive. Maz is very kind and helpful and you can ask us all questions as you go along. We are a great team and i have found the doctors are brilliant, very kind and offer any support needed.

[JaK2ET]

Belated welcome to the forum! (I've only just seen your post.)

Perhaps by now you will have seen your haematologist and got some more information?

I hope the doctor has been able to give you at least some reassurance.

Stay in touch with the forum - I've only been a member for about 4 months and I've already learnt so much ...

Good luck!