News

[Lady in Red 01]

Hey Guys,
What Fabulous News, Australia has a Forum for MPN...
I think it's a great site with Huge Potential to grow into the "Number One" go to site for help, understanding, knowledge, last but not least the opportunity to talk with Mates....

As it grows and expands in numbers there will be an absolute font of knowledge,understanding and compassion of each other's issues with whatever particular flavour of MPN the Individuall has.

To share is to learn, support each other on the MPN journey in a place of warmth and understanding with issues that we are possibly unable to discuss within our daily life with family, friends etc..

This Forum will provide the Annonimity to Talk Freely which is Priceless....

One can only Congratulate the Founder on Creating this Forum for Australia, this will undoubtedly be a Hugely Successful Forum with Members Worldwide....

Together we are a Louder Voice asking for Research, Good Management and the
Best of Opportunity's for each Individual Case.....

I am personally looking forward to All there is to Come with MPN Mate...

I am so happy to Support the Forthcoming
Fund Raising Cycle Ride Circumnavigating Australia, it is an Absolute Privilege to do so...
Awesome Undertaking by a fellow MPN Sufferer...
" One Giant Step for MPN"

[socrates_8]

Hey Lady in Red...

Thank you so much for your wonderfully warming first new member's posting...

Yes, we also all hope that Mate's Forum patient's website will prove a resounding success, and thank you so much for your warm vote of confidence in us.

Stay happy & well...

Best wishes

Steven

[Merry]

Welcome Lady in Red!

What a fantastic first post and I wholeheartedly agree

Kind regards

Merry

[Lady in Red 01]

Hi Folks
Last week I received a letter from Professor Harrison at Guys London telling me the results of Gene Panel Test...

Sadly it has been confirmed I have the AXSL Mutation..
Thus I am now ET JAK2, AXSL,
MF Intermediate 1...

This came as quite a shock that I have
2 mutations ...

I'm currently on Hydroxycarbamide
1 Gram Daily...

I have been questioning Ruxolitinib as an alternative medication, however here in the UK I need to be at least Intermediate 2, to
qualify me to receive Ruxolitinib...

I now hope that with the AXSL in the mix I can transfer to Ruxolitinib...

All rather worrying and disappointing in a sense and fearful...

I would welcome any information from anyone in similar circumstances...

I wish you well and hopefully good prospects for the future in your MPN JOURNEY

All the Very Best to All
Maria