MATEs FORUM

Hello everyone,

I am so glad to have found this forum, well I didn’t find it so much as Dr Forsyth told me about it and said a guy named Steve was a great guy.

I am 55 and was diagnosed with ET jak2+ in October last year. Due to many symptoms I was put on aspirin and also started on Pegasys. Thankfully my symptoms either went away or decreased but my platelet level was stubborn and wouldn’t budge lol

Over the last 14 months we slowly increased my dose up to 180mcg and the then my levels began to drop. Got down to around 400 last month and just under 500 this month after getting to have an appointment with Dr Forsyth.

At the moment it looks like I might actually have PV, but have a raft of bloods that need to be done in January to see what’s going on. All my red cell levels are at the high end of normal, and it seems this has been the case for several years. My iron is also low, especially Ferritin.

So I am currently in a wait and see position and hopefully will have a little more certainty once these tests are done next month.

Thank you for letting me ramble and I look forward to reading through this forum and find people in a similar position.

Simon

Hey Simon...

Welcome to MATES, (Australia's 1st MPN Patient's FORUM & INFO website).

So glad you found us, and that you seem to have worked out how to use MATES FORUM already Simon, well done!

Just a couple of pointers that might help you a tad...

Firstly, please remember to 'Tick' the "SUBSCRIBE" radio box in order to become advised of when anyone might respond to your POST, otherwise you won't know unless you just keep checking etc...

Yes, Dr Cecily is awesome! Well done finding her too... In my view, Cecily is Australia's leading MPN Specialist having worked in that capacity for over 20 years we all learned recently, when Cecily gave us 2 hours of her time to join one of MATES Q & As that we hold ONLINE every Six (6) weeks.

The notice for those Cafe Catchup Meetings, is always on the FORUM, and I usually also do a "First & Final Reminder" just before each next meeting etc...

As you have now joined MATES, your EMAIL will be automatically included should you wish to come along for what is usually just a very informal & informative meeting with other MPN patients from MATES.

Both the 'Reminder' Email & the FORUM POST of the meeting, always has a "MEETING LINK" attached.

However, a quick 'heads-up', it's usually best to first download the MICROSOFT TEAMS APP to your chosen / preferred device. I find my Laptop works best for me... But some use Tablets, Desktops & even their Phones... Choice is yours of course...

Anyways, feel free to fire away any questions you may have... (?)

Please tell us a bit more about you Simon, & generally where are you located? We once did 'Live' Cafe Catchups but COVID stopped those, & generally speaking, possibly wiser this way too...

Again, a very warm WELCOME TO MATES Simon...

Hopefully others will see & respond to your 1st POST shortly...

Best wishes

Steve
MPN-MATE RF Admin

Hi Steve, thank you for the warm welcome and information.

About me…

Retired Navy Medic of 25 years, now living by the ocean in Lake Cathie, pronounced cat-eye. Located just south of Port Macquarie. Partner and I had the house built and we moved up here from Sydney nearly four years ago.

Currently taking the time to look after my health as well as volunteering with Marine Rescue.

Very much looking forward to the next coffee catch up and chat with others. Is there anyone else on here from around my area?

Evening Simon,

How interesting it is to learn a little more about you too...

Presently, I am not aware of any MPNers located nearer to you, although the closest might be in Mudgee I think... That's Katie... Like you Katie was diagnosed (Dx) as ET JAK2+ & did initially move onto Pegasys' however, Katie has since progressed to my own Dx which is slightly different, (as my Driver mutation is CALR (2), & not JAK2. Nevertheless, we are both Post ET / MF these days. Katie is a tad more mature than myself (c.80yo), whereas I am a mere 65.

Incidentally, when Dx my age was closer to yours (57), but I soon had a number of Transient Ischemic Attacks (TIAs), which are minor brain strokes. CALR (2) means my Platelets are always super high, (currently low 800s). These days my immune system is suppressed by taking Ruxolitinib (Jakavi) because it slows down the unwanted & over abundance of mutated blood cells.

You do live in a beautiful part of the mid nth coast in Lake Cathie. Just so happens that back in 2021 I cycled 600+Ks in 5 Days from Sydney to Coffs H, (briefly stopping at the top of the hill there for refreshments before continuing on...

Like you, I have learned the benefits of a healthier 'Life-style' of choices, & I do find that makes managing my condition a tad easier too...

However, I do not preach to others, everyone tends to manage there illness in the way & manner that best suits their own needs, in my view...

Many years ago now, I parted with the love of my life... A beautiful old, wooden 40' masthead sloop. I also used to publish a Marine Annual, that you might have heard of called "Ship2Shore"(?)

But not to worry if you have not, that too was a great many years ago...

Anyways, I shall look forward to catching up with you in due course hopefully at one of our Meetings...

Have an awesome night Simon...

Best wishes to you & partner for an awesome festive season...

Steve

PS. BTW, any nautically-minded person working for the volunteer Marine Rescue will always gain all the support I myself might impart from time to time...

Hi Simon
I’m Mark, I’m 66 and I live in Lake Macquarie. I was diagnosed with ET Jak2+ ten years ago and for the last six years I’ve been on Pegasys injecting 67 mcg every 5 weeks with all my blood results pretty much in range. I have to say it has been a brilliant drug for me. I was lucky as ten years ago my GP referred me to Cecily Forsyth and she is simply awesome. We have journeyed together since then and I trust her implicitly.

It does take some time for your body to adapt to Pegasys and for me for virtually the whole of the 6 years on Peg I was on 90 mcg’s but I have been able to push out my injecting cycle from weekly to now five weekly and only recently I’ve dropped to 67 mcg’s. So like all MPN’s our treatment journey’s do take time and you learn to have patience as you deal with them.

This is a great forum where you can get info and support from people who absolutely understand what you are going through.

Cheers

Mark

Hi Simon,
My name is Katie and I was diagnosed with ET Jak 2 in 2005. (Many years ago)
I was in UK at the time but moved here to Australia to be near my family. I was very lucky to come into contact with Cecily Forsyth and she has looked after me for several years.
I too, was on Peg but unfortunately my ET progressed to MF so I am now on Ruxolitinib like Steve.
We are certainly a mixed crowd at Mates but we all support each other through the difficult times and Steve is great at helping out with advice.
Anyway, welcome to the forum and come and join in on our ‘coffee catchups’ where we can discuss all aspects of our MPN’s,

Best wishes,
Katie

Once again thank you for all the comments, seems like a great community.

Of course I know Ship2Shore, though I have not come across it in many years.

I lived in Mudgee for a few years, I was in year 11 and 12 there. My Mum lives in Dunedoo and two of my siblings live in Dubbo and we will be spending Christmas in Dunedoo this year.

I class myself as being very lucky as I am on 180 Peg every week and aside from a little redness around the injection site, I don’t get any of the side effects that so many have mentioned.

My intent is to go through the forum during the Christmas downtime and read everyone’s experiences, I think I will learn a lot and not feel so alone in all this.

Simon

Hi Simon,

I was just driving past Lake Cathie the other day. We live at Lake Macquarie and visited Port Macquarie for a family Christmas get together. Magic part of the world.

I spent 43 years in the Army and was forced to "retire". The docs didn't like me being on Hydroxyurea (that's a long and funny story which I think you would appreciate given your service experience). I fought them for a long time but finally gave up and retired the day before I as officially diagnosed with MF. I'd hate to imagine what they would think of Ruxolitinib that I'm currently on.

I'm CALR+ and TP53 MF. (You'll get used to all this jargon. Doctors are worse than the military in that regard.) I too now see Cecily and she is very thorough. I was initially diagnosed with ET at age 50 (12 years ago). I had 12 good years on Hydroxy before changing to Ruxo under Cecily's care. Life is good at age 62 and I'm doing everything in my power to ensure it stays that way.

Welcome. You're definitely not alone. Reach out anytime.

Peter.