MATEs FORUM

Hey everybody:)

I have been a part of the UK mpn voice forum which has led me to here. Somewhere closer to home:). I Have read many stories and posts already in a very short time here and on mpn voice. So much great support an understanding. It's awesome.

I was diagnosed ET CALR 1482 platetlets in April this year an came as a massive shock. Lots of emotions an fears more then anything the worry of my 3 wee boys 4 6 and 8 without a father:(

I have learnt a lot in the past months from many resources(be your own advocate....very true).

Had many blood tests like all and a bmb. Fortunately only taking a short couple of months to unravel the verdict. I really feel for those who have waited months and months if not years for results without knowing or getting any answers.

The fatigue is the worst that's for sure but before I knew anything I just thought working as a drainlayer in the elements for 8 to 10 hrs a day was good reason to feel knackered. One person described the feeling of wading through mud. I literally am some days.

Much more to say just not today;)

35 male from New Zealand
100mg aspirin a day watch and wait

Thanks

Morning & greeting from not so sunny Sydney,

My name is Steve, I am the Admin for MATES, & usually the first person to welcome New Members. So please be welcome "The Nemesis"

Please feel welcome, & have a good look around the site, & hopefully others will be along in due course. However, we are much smaller than MPN Voice & often not quite as active as that website either, unfortunately. We may be young, but the website does contain a great deal of useful information, for example:

1. MPNs What Are They?
https://www.mpn-mate.com/giving-for-mpns/

2. Essential Thrombocythaemia (ET)?
https://www.mpn-mate.com/essential-thrombocythaemia-et/

3. Fundraising Efforts for MPNs 'Down Under'
https://www.mpn-mate.com/giving-for-mpns/

Personally, & much like yourself, I was originally diagnosed in 2016 as ET, w/ the 'Driver' mutation of CALR+ Type2. However, within a very short period & after my BMB, that was reclassified as Myelofibrosis (MF), as I was Grade2 w/ Fibrosis. Then I found I also have an unfavourable 'High Risk Mutation' (HRM) called ASXL1+, & shortly thereafter another condition known as 'Von Willebrands Syndrome' (VWS), which quite simply means that my Blood Platelets tend to be very 'sticky', & which can cause minor brain strokes or Transient Ischemic Attacks, (TIAs).

I've actually had a few of those now, & they can tend to be a tad concerning...

However, I am much your senior in age 62yo, & you by comparison at 35yo are fortunate indeed to be only requiring Low Dose Aspirin 100mg, in order to manage your platelet levels. Usually, people well under 50yo, are commenced on Aspirin only, & that is the best way to keep things for as long as you are able too... Hyroxycarbamide (HU), is the standard go-to oral chemotherapy drug that doctors like to commence MPNers on, & especially so ET, because in the first instance they can keep the platelets at a lower level. However, & in my view & that of a great many others, HU can create many other issues...

Thankfully for you, such decisions may be many years off into the future, & if & when that time arrives, (IF it does at all?), I would suggest rather strongly that you try to find an MPN Specialist that knows about Pegasys' Interferon, as a preferred alternative to HU.

Not everyone that has ET, does progress, & you might be one of the lucky ones, who knows right? However, there are many people w/ ET here, who have found a Dr Cecily Forsyth on the Central Coast in Gosford NSW, & they will all attest to her superior knowledge of MPNs & Pegasys'. Might even pay to look her up and give her a call sometime... just a thought...

By the way, do you know which CALR type you have? There are possibly over 50+ however, over 80-90% of them usually are either Type 1 or 2. I have Type2, which usually means much higher Platelets, Type1 is supposed to be somewhat more indolent in the nature of progression.

Anyways, I am more than happy to provide whatever answers to questions I can concerning my own condition, & as you will see, even w/ the dreaded days of high fatigue, I have still managed to keep myself active cycling to bring awareness to MPNs 'Down Under' where these conditions are so very rare indeed...

Fatigue, described as wading through mud is highly appropriate. I also suffer from very heavy sleep deprivation, & at present I can tend to be a tad concerned about trying to sleep. Unfortunately, it does not come easy to me at all...

Not sure how you went becoming vaccinated to COVID-19?

In my own case, in order for the vaccines to be able to create a seroconversion, (& provide antibodies), I had to cease taking one of my medications, & reduce my 'Immunosuppressive' medication too to hopefully gain some protection from the vaccine. In my case I was successful at doing so, however, that too seems to have heightened my fatigue levels of late.

Hopefully, you will find some assistance & answers here, and do please let me know if I can assist you further in any way at all?

Very best wishes, stay safe, happy & well...

Steve

PS. Please remember to 'SUBSCRIBE' to emails, by Ticking the small radio box that states:

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Hi Nemesis,

So sorry to hear you have ET at such a young age but diagnosis and medication has improved significantly over the years.
I was diagnosed with ET in 2005 and was immediately put on to HU. Over the years the medication was increased and finally I was unable to tolerate the dose.
Happily I found Dr Cecily Forsyth and have been on Peg interferon for over a year.
Fatigue is a problem for me too but as I am now elderly, I cope as well as I can.
I too, belong to Voice and have found it to be both comforting and helpful over the years.
As I live in Australia, I was very glad to find
Steve and this forum. In all fairness. I first came across Steve on Voice. So happy as I did as I was moving from the UK over here and felt quite at a loss.

You have many years ahead of you so don’t worry about your kids. You will still be around to watch them grow up. You just need to adjust your life and try to find a good MPN specialist.

All the best
Katie

Hi Nemesis
Welcome to the group. It’s great to hear from others going through the same thing
We have a 17 year old with ET - calr mutation not sure 1or 2( diagnosed 3 werks ago)
He has been put on 100mg aspirin atm after checking how sticky his platelets were.
The shock is normal we still scared nervous and all else that comes with and try not to watch him too closely. Reading and learning as much as you can helps.
Good luck with it all
Marie

Hi Nemesis
My name is Mark, 63 and have ET and JAK2+. I was diagnosed in 2014 and have been on treatment since 2016 with the first two years on HU and the last 3 on pegolated interferon (Pegasys). HU was a bad fit, but Peg’s been brilliant. I’m well and all my haematology and biochemistry results are good. I inject three weekly and still have some fatigue in injection week as well as some muscular pain in my back, but all in all its very manageable. This forum is fantastic and you couldn’t find a more supportive group of people. I echo Steve’s point about finding a haematologist who has a good understanding of MPN’s. Perhaps contact the NZ Medical Association to see if they can tell you who is a MPN specialist in NZ.
Cheers
Mark

Hey thanks Steve an everyone else for having me. Will be another great spot to learn an compare notes. Thanks for your replies:)

Type 2.
Are you talking about reticulin? Minimal stain in some areas grade I

Cheers;)

Afternoon Nemesis...

Yes, bone marrow is where we find reticulin, which helps form a mesh-like structure. Fibrosis, is a scarring of the bone marrow, & the BMB is usually graded over Four (4) levels from 0-3. Hence, Grade 1 is not too bad but you have a long way to go before it progresses, & you are still quite young.

Please stay in touch...

We used to have Cafe Catch-ups, (before CV-19). Maybe we shall again sometime soon... (?)

Best wishes

Steve

Oh yea sweet as thanks for that. Good to know:) An there was no mention of aslx1 in tests. My wbc has come up high in the last blood test which is a bit of a worry though.

Just heard from gp an haemo that it should be safe for me to get pfizer Vax now as platelets around 1500 I didn't want to aquire vwb and end up on chemo early.

And Yes would be keen as for a coffee anytime hahah if your ever in Nelson Nz;)

Cheers

Hey Nemesis...

No problem, my pleasure...

You'll come to understand in time that there are two (2) general types of mutations that we refer to w/ MPNs:

1. 'Driver' mutations, which are those thought to be responsible for the abnormal cloning & proliferation of our blood cells:
JAK2; CALR (Includes ALL types); MPL; Unclassifiable & Triple Negative (Knowing one's Driver mutation can help w/ diagnosis)

&

2. High Risk Mutations (HR): In order to discover whether one has any of those, a different 'Next Generation Sequencing' genetic test needs to be conducted. Those tests usually have a turn-around for results between 6-8 weeks. (HR) mutations can generally refer to one's adverse progression, they are a tad expensive to undertake as well.

ASXL1, which I mentioned earlier, is one that I have, & they say that it generally indicates a more adverse prognosis... But I am still here...

If you follow the Link, and then Scroll Down to near the bottom of the Page you'll find some further information in regards to mutations etc...

https://www.mpn-mate.com/mpns-what-are-they/

We have done a few 'Virtual' ZOOM Cafe Catchups too... I have just been quite slack of late organising the next one. However, I can let you know when we do the next one if you'd like to join us for a chin-wag etc? Just let me know...

We do have a few Kiwi members, however, I have no idea where they all reside etc (?)

Best wishes ...

Steve

Hey

Thanks very much I can understand that. I'll have to mention the HR next Gen sequencing next visit an see if they even do that here.

Another question would be....what sort of vitamins supplements do people take to lessen symptoms etc.

Cheers

Morning Nemesis...

My pleasure buddy, & always happy to assist where I may...

By the way, most major hospitals in Australian capitals should be able to provide a (NGS) test if you feel one is required. However, I am not so sure you need worry about it at this earlier stage. Still knowing if one has any other (HR) mutations in the earlier stages might help create a benchmark of sorts. My only advice would be to discuss the need w/ your MPN Specialist, if indeed you have one in NZ, they are so rare (?)

Mine was $500 from the Peter MAC Cancer Foundation in Victoria.

There is a member who is quite knowledgeable (who lives in NZ). His member name is 'PeterPotter'...

Might be useful to seek him out about his knowledge of all things MPN in NZ?

Cheers, stay safe & well...

Steve

Excellent
Thank you very much. There must be a direct message. I'll try that with Peter and see what he knows.

Knowing or not knowing, don't know which one helps sometimes hahah. To start with anyway.

Cheers

Hey Nemesis...

Yes, there is a Private Message (PM) Tool... located in the Top Right of your screen when you're Logged In etc...

I have tried emailing Peter, however, I have not heard from him in some time... Loves his garden & often disappears out there for long periods etc...

Hopefully, he will be along shortly...

There's also a girl in SA, who had ET in her Teens... Her member name is 'Silver ET', you could try chatting w/ her too...

Best wishes...

Steve