Can anyone tell. Me what calr is

[Garden987]

I was diagnosed in 2014 with JAK2 ET. Earlier this yawn I saw an MPN specialist who took another blood test and told me I have CALR and it was the "least problematic" mutation. I know there are two types. -- 1 or 2 - but that means nothing to me . Have an appt. with heamo. In 3 weeks but am totally confused and frankly, worried as I don't understand. Each time my llatelets increase she increases my Hydroxy. Went from 230 and next BT showed 500 which is when my Hydroxy was increaed. Any thoughts or suggestions please. Thank you. Mary

[Swede]

Hi there, I cant say if one type is better or easier than the other, as with everything, it depends. But when I was diagnosed 2007-2008, I had to sort of try to get the right amount of Hydrea.It took me some months to get to the point when it was alright. The interesting thing is, that after that I have had the same dosis until now! I have now been asked to take a bit less. So, it will be interesting to see next week, what has happened. I guess a few thing can affect the E.T. . For me it is stress! I cannot stand stress at all. I really makes me worse. Before, I used to like a bit of stress and could handle it very well.

It is a bit funny, if you dont mind be saying, that you say "Earlier this Yawn..." as most of us, but not all, suffer from fatigue and tiredness, lack of energy et cetera. I think it is a very good way of explaining it.:-))

[Wyebird in reply to Swede]

Like you I can’t deal with STRESS but used to thrive on it. So many of us can’t cope with stress but when I asked my nurse about it she said it wasn’t a symptom or side affect

[Swede in reply to Wyebird]

Oh, she knows things! ......

[jane13]

my apologies if i tell u what u already know:

Several of the mutations associated with mpns are linked to a higher likelihood of progression to MF. I think your haem is saying that your calr mutation is the one that gives a lower likelihood of progression.

Re platelets, high levels are a risk factor for stroke . If you have other risk factors e.g. age, that mean you want to reduce these levels, the only way to do it is taking a drug like HU.

good luck

[socrates_8]

Hey Mary...

My name is Steve & I am MF w/ CALR Type 2.

Type 1 is apparently the lesser, and therefore the better type to have as I understand it. However, CALR is better than if one is Triple negative, JAK2+ or MPL, again... as I understand things...

However, I am sure that your Haem' will eventually inform you more accurately than I can...

Best wishes & keep smiling

Steve

(Sydney)

[Wyebird in reply to socrates_8]

Good simple explaination

[Mazcd Partner MPNVoice]

Hi Mary, this article in our newsletter might help explain it all

mpnvoice.org.uk/documents/n...

Best wishes, Maz

[Wyebird in reply to Mazcd]

Thank you Maz I’ve just learnt a little more about MPNs.

[Wyebird]

Hi Garden, think we’ve texted before. Im Calr. As you know the majority of MPN patients have a mutated Gene. Calr is a mutated gene. I’d ask for clarification.

Ask If you have both jak2 and Calr mutations? I understand you can have both.

How did your haemo come to the conclusion that you are now Calr.

Regarding mutated genes, yes the Calr is supposely the better mutation to have.

I think individuals respond differently both mentally and physically. I think those with ET on a low dose of hydroxicarbomide and no side affects are most probably better off and that your mutated gene is incidental.

Good luck.

[Garden987 in reply to Wyebird]

Hi again. Thanks for replying. I honestly don't know what's happening here which is.making me frustrated and anxious. Had BMB in 2014 and some very junior doctor said she thought it was JAK 2 Haemo. Told me that I should take Hydroxy. and bye bye. I had horrendous sous side effects from Hydroxy. But all she said was "take it or don't". You mentioned stress. Won the golden globe for that and still can't get it under control. I saw an MPN specialist last year who told me that I would get the information and support from MPN! At my 6 month checkup another blood test and I was told I have CALR not JAK2 and that CALR was the "best" mutation as I wasn't likely to have blood clots etc. Honestly, reading all the posts on this site has left me more confused than ever. I'm supposed to keep smiling, keep going and get on with it. Since diagnosis I have felt very poorly, numerous infections - which of course are going to make me smile - and frankly am tired of having to do my own erase arch to present to my haemotologist That is not how it should be. I feel unwell much of the time and live alone. Not much to smile about other than to say there ARE others worst off than me. You say stress is a problem for you. How do you deal with it? Mary

[Wyebird]

I’m retired, I warn the family when I feel it coming on then I walk away as it leads to tiredness then fatigue.

It almost cost me a holiday this year as my friend and I were going to go to the Greek islands( self plan) . Initially I was e excited, as soon as she said you look up accommodation, stress crept in. If it was for me and not having to satisfy others I can cope. After a few hours I said, sorry can’t cope you go my yourself.

Now she’s done the lot all I have to do is pay her.

I used to be the hare now I’m a tortoise.

I don’t cope very well with life. I don’t like the new me. I’m too slow.

No wonder you are stressed, I think you need an MPN specialist.

Do you live in Milton Keynes? If so, Guy’s hospital has a formidable MPN department, also Birmingham. Both easily accessible from MK.

Maz I’m sure will point you in the right direction.

[socrates_8]

Hey again Mary...

Stress, unfortunately is another one of those interesting bedfellows that can be associated with having an MPN, in my view...

I had been studying full-time at uni (for 5 years), and taking care of my aged/partly immobile mother in her early eighties when I was to learn about my MPN via a standard medical, (prior to being posted abroad to SE Asia 2 days before I was due to leave in fact).

Hence, my diagnosis was not only very overwhelming but also extremely depressing to have learn how to cope with etc. None could really understand my bitter disappointment in that instance, in my view...

Some years before all of this, I had a particularly upsetting relationship breakdown w/ my then fiancee. Hence, in my own view, I do certainly see a connection between stress, and the triggers it might have for creating a molecular change in ones genes at a sub-atomic level.. But please don't ask me how

Mary, do you know if you have both Jak2+ & CALR (what type is it 1 or 2?).

You can ask those questions, and maybe record and/or take notes at your appointments. Sometimes I do write them down prior to attending because generally speaking there is not a great deal of time to learn from the (so-called) specialist.

Personally, I like to be as well informed as I can be with my condition. Because in Australia, we really do not have MPN specialists per say...

Unlike our UK & US, cousins who do... So you are more fortunate than I in that instance ...

However, it is sometimes very annoying I know, to realise that I tend to know somewhat more about my own MPN condition than do my doctors, and they do not like it either. However, when I ask them specific questions that relates to new research in the field; newer scoring systems; the implications of newly discovered mutations (like ASXL1) for MF etc...

It really annoys me that they know little or nothing more about those areas of interest, but rather, just whatever it is that their current job function requires of them...

Hence, rather than letting that knowledge impact on me too much, I increase my own efforts to come to understand more about MPNs.

Paul on this site, is another who also conducts and reads a great deal of new information about MPNs.

We do have to remind ourselves too... That MPNs, and their most successful treatment regimes, are a relatively new field of medical endeavour. The JAK Stat pathways (& JAK Stat inhibitors like Ruxolitinib), and the most well known mutations to do with MPNs is (like CALR) are brand new. Those discoveries and others have continued really only over this past decade...

Hence, I find myself having to be more patient & understanding why so many doctors know so little in this relatively new science... We are all only human after all, and we teach ourselves and learn over many years of much ignorance...

... Remember the Copernican Revolution... Science & learning unfortunately does take time... but things are always edging forward, in my view...

Hope this might help a tad...

Steve

(Sydney)