MATEs FORUM

Hey Leon...

Thanks for your POST...

Please do also let me know what happens with your Dad too...

Best regards

Steve

Hey Allan... :-) Nice to hear from you and thank you for your POST. I can barely believe that this has happened to me yet again... And I was in no way responsible for anything other than 'being there'... Almost 12 mths since the last incident. Bought myself a Lotto ticket today... ;-) Yes, I believe...

Morning Katie...

Thanks for your Post & well wishes...

Slowly on the mend one suspects... (fingers crossed)

Steve

Evening all... :-) Unbelievably, this POST is simply to advise that I have been unable to attend to my usual website duties for MPN-MATE RF. On Good Friday, just after leaving my cycling companion Andrew, I was heading east towards home feeling awesome after an excellent Ride with great company. Sad...

Afternoon all... Found this recording that was quite interesting for anyone wondering about the different descriptions for patients with Myelofibrosis in particular, although it is also covering all MPNs indirectly too... Hopefully you too will find the Video of great interest... [flash=]https://you...

Morning Katie... :-) Yes, it might prove a rather useful tool indeed... They did say that they are also hoping to make it happen 'Internationally' too, at some point... (?). When that might happen ijn a 'Global Recession' however is anyone's guess... ? And I'd definitely been interested in giving it...

Evening All... MPN Voice has collaborated to help create an MPN APP... So far just in use in the UK, they may soon make it an 'Internationally Available APP' Watch this space... Here's a small You Tube about the APP: [flash=]https://youtu.be/8F45ZMt5aCs[/flash] Happy to hear of any and all concerns ...

Morning again... Here are the NEW CAFE CATCHUP Meeting details now returning & utilising the FREE ZOOM account for the foreseeable future... MATES CAFE CATCHUP - Zoom Meeting Time: Apr 6, 2025 06:00 PM – AEST Join Zoom Meeting LINK: https://us05web.zoom.us/j/82183076234?pwd=yl9cS8Awz9Tga8mLfMzMx...

Morning All... SPECIAL ANNOUNCEMENT – MICROSOFT TEAMS SUBSCRIPTION CANCELLED Due to circumstances beyond my / our control, I have as of today decided to make an Executive decision to Cancel Our (Microsoft TEAMS) subscription, as I was totally unable to utilise the system to set up our future Cafe Ca...

Evening Peter... 8-) Thank you so much for making this most informative & enlightening POST concerning the monoclonal antibody CALR Clinical Trials being run by Ass Prof' Dr David Ross in Adelaide. Naturally, I am certain that everyone would be admiring & praising the work he and his researc...

Afternoon all... After having a read & cross-referencing a few articles, I decided that this POST has some extremely interesting findings... From the time I first became diagnosed (Dx), I knew that there were some rather interesting symptoms I'd experienced, however, nobody connected them to the...

Hey Sharon... :-) Bon voyage to you guys too... 8-) Interesting "pat-down" results... Well, I guess that it is very good to know they are on the job! I remember years ago, after my visit to West Sumatra, (after Earthquakes – I was Teaching ESL), Customs kept me entertained w/ many question...

Hey there Birchshores... I am sorry to learn that you may be experiencing some adverse side-effects, (let's hope not of course). However, it may be true to... I guess we'll all know more when you do, so to speak... Hopefully, you are correct, and you're suffering from a bug at the moment... & th...

A perfect Heart! Excellent news there Sharon... :-) Personally, (not sure what other might think here)... However, I believe that I have heard of those chest complaints previously from people taking 'Interferons'. Not so sure about the higher platelets causing heart issues tho'... My Platelets are a...

Hey Sharon...

Thanks for this POST...

Watching the NINE video helps show why some of these newer treatments need to be accessed via the PBS urgently!

Best wishes...

Steve

MPN-MATES CAFE catchup.png CAFE CATCHUP – NOTICE TO MEMBERS & GUESTS In our next Cafe Catchup in February, a well-known MPN patient advocate & author will be joining us to discuss her new book, which is all about the 'Lived-Experience' of navigating an MPN journey... Should be interesting.....

Evening all... :-) UPDATES on BESREMI effectiveness for Patients Who Have Switched from PEG' For ALL of you currently taking Pegasys', (& in lieu of a possible shortage), in both the USA & now the UK, patients who have been fortunate enough to have made the switch to "Besremi" are ...

Hi there everyone... Almost Seven (7) years ago (January 4, 2018), Robert Rosen passed away after complications emerged from his Allogenic Stem Cell Transplant (ASCT) procedure. The following link and video are shown here to remind us all of how many of the discoveries concerning MPNs, were found th...

Hey afternoon all... Belated New Year's Tidings & very best wishes for the most prosperous 2025 year ahead... This Post is provided from our great Researcher friends from MPN Research Foundation in the USA. While this is a slightly longer video presentation, it is also very worthwhile in learnin...

Beach Santa3.png VERY HAPPY FESTIVE SEASON & NEW YEAR'S WISHES TO YOU ALL... Belated a tad... Best wishes to everyone for an awesome, happy & safe festive season... And the most prosperous New Year ever! 8-) See you ALL next year... ;-) Steve & the MATES TEAM Beach Santa3.png

Thanks so much again Pete for Posting... 8-) I love diving into research as often as time permits, I shall be sure to take a deeper dive shortly... Best wishes Steve PS. Pete, pls don't forget to "Subscribe" to the FORUM, so that you are always notified of any responses etc... 8-) If you s...

Pleasure Pete... :-) Please keep us all informed should you decide to follow that route, with the CALR Clinical Trials (CCT). They are also doing the same recruiting at the Alfred in Victoria, according to the link provided by Ass Prof. David Ross etc. Hopefully, come mid 2025, such a CCT might also...

Nice information there Pete... 8-) Thanks again for Posting that 'Link'. Yes, it will be a long slow & drawn out project, of that I am sure... Globally, we might still yet bare witness to even more economic constraints, (Trump factor on Tariffs)... Our current government is trying desperately to...

Excellent Simon, And looking forward to seeing you there... Yes, I ceased publishing Ship2Shore back in 2006, (last edition). However, I did not realise at that time part of the reason it had to cease was because I could no longer do so many things at once... ;-) Anyways, good news for you is that b...

Morning Rosie & thank you so much for POSTING, This may prove to be very important news... I have started a discussion with the TGA, in the first instance, about the remote possibility of the TGA & the PBS bringing "Besremi" into Australia as an equivalent sort of alternative for a...

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,...

Hey Pete... :-) Thanks for your Post... I'm ok BTW... Just the usual stuff really! 8-) I seem to recall, that the CALR CT is ONLY available if you are located in SA... (?) I have David Ross's contact details & I'll therefore try to ask him, where the CCT is up to atm, if you like...? Would you b...

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! 8-) Just a couple of pointers that might help you a tad... Firstly, please remember to 'Tick' the &...

Hey Pete... 8-) Great to be hearing from you again... Hopefully, "Birchshores" is keeping tabs to also understand, "...why her doses have been increased etc...?" Me, I am struggling a tad at the present, with more than my usual aches & pains, and especially so given the seaso...

Hi there Birchshores... :-) Firstly, wishing you a very warm Welcome to MATES... (Ever so glad you've found us...). :-) You are in fact now the 2nd CALR "mono-clonal anti-body" MPN patient to advise me/us here in Australia about their experiences thus far in the INCYTE version of this Clin...