MPN Voice
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Yet another one!

Nice to know there are a few of us heading down the same road. As New Zealand is so small not many other people with MF and only met one other who passed away few months after I met him. Lucky to have an exceptional Hemo at the local hospital. Now have count of 90 but feeling very well. Retired a year ago and this helped a great deal.

Very interested to hear other people's experiences.

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Kia ora Guy,

Welcome to the group. There might be more people living with myelofibrosis in NZ than you are thinking. The MF occurrence rate seems to be pretty consistent around the world. Read that in the US there are about 16 to 18 thousand people living with MF, so applying that same sort of rate suggests there would be over 200 kiwis currently living with MF and more than 1000 aussies.

I was diagnosed with primary MF quite a long time ago. Had a really good run but things are progressing on me. Still in good health relatively speaking.

Sounds like you are in relatively good shape also which is great. It is important to realise that while there are lots of similarities, everyone is also different.

Cheers, Simon

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Thanks for the welcome on board

Yes there seems to be guidelines but the Hemo said that everyone seems to progress differently. Yes I've heard of some in NZ that have received bone marrow replacements which have been quite sucessful.

I assume you are NZ from the the greeting?. What seems to be a common thread in the forum is the key is to getting on with life and not spending time worrying about what you can't change. Its worked for me!😊.

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Yep, a Cantab. Quizzed the Reg who did my BMB this week and she seems to have seen many MF patients, not that I have met any of them. As Janet commented, we MF'ers tend to be a quieter bunch. Your upcoming holiday sounds great.

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Yep looking forward to it. Yes there seems to be a few MF ers around but as I say only ever meet the one.

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That is one more than me. If I am up your way I will get in contact. Let me know if you are down south and we can sort out a catch up in person. Also happy to phone you for a chat if you want.

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Hi from England. I have PMF diagnosed 18 mths ago in early stage. I have just started on Ruxilitinib more for the symptoms than blood problems.

There aren’t too many posts on here about MF so I’m thinking we are the quieter group😂 but if you write a post we all come crawling out of the woodwork to give information about our experiences.

Welcome to a great group of people Guy

Janet x

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Morning Janet (your time)

Thanks for the welcome. Yes it appears that when you inquire about things, other people do come out of the ether. Its great that this happens both for support and informed discussion.

As we are all facing the same problems but at different stages and with different ways of life it gives us all strength and understanding when we need it.

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So true and we know it’s the best advice

Janet x

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Welcome Guy... (Kiora)

I am Steve from Sydney. I am sure that there are plenty of us MFers about to help answer the odd question as best we might etc...

Best wishes

Steve

PS. No not a Kiwi...

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Many thanks. Yes a very active forum. Found it by accident so a great find.

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Kia ora Guy,

I'm also in NZ and have ET rather than MF. There are about 3 other MPNers from NZ on this site that I know of, but there may be more quiet ones! Very pleased to have found this forum as it has been a good source of information as well as much needed moral support. Kind thoughts from down Dunedin way! Peter

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Kia Ora Peter,

I am a southerner as well, a Cantab, with MF rather than ET. I recall some time ago that you wrote that you do not travel much. Since then I have been intending to contact you when I next travelled south. Unfortunately I have not been down your way recently, which is unusual for me. Have enjoyed your creative writings.

Cheers, Simon

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Kia Ora Simon,

Delighted to hear from you, and good that you are not that far away. We have a little gallery about half an hour North of Dunedin and you are most welcome to visit for a cuppa if you're passing this way some time.

Unfortunately I don't travel far very often as I do wear out quite quickly when driving, but my wife does threaten to bundle me up and put me on the bus to Christchurch one day for a short holiday, so... You never know I might venture North sometime!

It might be useful to "compare notes" a bit regards health care as it does seem a bit hit and miss at times and I'm still a bit mystified as to what diagnostic and treatment options are available in NZ. I suspect that there may be variations depending which DHB is providing the care, but I don't know that with any certainty!

Anyway very good to hear from you!

Best wishes, Peter

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I am unaware of DHB variances. Guess it is possible. Australia and NZ work together on medical processes however NZ seems to be slower at implementing new medications, for example Rux. I will look forward to catching up for a cuppa some time.

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I have a transplantee buddy in NZ, Kathy Thomas. You may have met her through other groups/forums there. Sadly I also lost two there. I have not met any others but there will be some around. I only use this and MPNForum Facebook while there are other platforms.

Chris

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Hi Guy. I too have MF ( and also struggle with the nuts and bolts if posting on this forum. I mostly have to peck out posts on an I phone.) Lots of good people here, and the fact that some of us are in the UK and some in NZ/ AUS only makes a difference so far as time zones go. Wr all have our own variants of the same conditions.

If you like to keep track of the latest research then Peter123456 regularly posts research updates that are really worth reading - and passing on to your haem if they are receptive. If I were handier with the IT I’d paste the link he gave a few days ago to a 2018 MPN disgnostic and treatment flow chart for the various MPNs Brilliant stuff.

Welcome aboard. I lived in Sydney for 10 yrs in the 1970s and walked the Milford Track in 1979. I like the Antipodean - lets just do it - approach to life, and I am also aware of the downside of lving in a country having a small population.

These sort of transnational forums help a lot.

All the best

Rachelthepotter

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Many thanks for the reply Rachel and the tip on Peter12345. Yes its good to share the information as this forum talks about things I have read about but the people hear have been taking them etc and can talk about how it effected them etc. Real Life experience not a document based on a clinical study

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Hi Guy, I'm from New Zealand (Manawatu) also but have ET JAK2+ and had 3 years on hydroxyurea then changed to Referon A interferon (a lot better tolerated). So your search for fellow MF-ians still continue ... I would be lost and very alone without this forum! Welcome aboard!

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Hi Fiona

I live in Levin and go to Bart Baker at Palmy Nth Hospital. I went to school with Barts older brother and know him well. A very bright man. I still only take a 100mg Asprin and keep very well. Don't hesitate to message me if you feeling a bit down.

Regards

Guy

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