Hi everyone,
Fortunately - I discovered the Mates forum through Assoc Prof Kate Burbury's talk.
I've just begun treatment at Peter Mac for my MPN after originally being diagnosed by a private haematologist in 2012. I moved to Peter Mac last year when it was discovered that I also had a rare form of non Hodgkin lymphoma that needed immediate chemo.
http://mpn.5stream.com/
MPN Patient education morning PMCC
Re: MPN Patient education morning PMCC
Welcome Annie. So good to hear from you. I read your other post with great interest. I will try to respond fully over the weekend but in the meantime i just wanted to welcome you and I’m so pleased that MPN patients are finding new ways to learn of the fantastic resource we have here at MPN-Mate. Regards, Merry
Re: MPN Patient education morning PMCC
Hi Annie
Thanks providing the link. Kate Burbury's talk was very informative; it is good to hear about the trials that are taking place at Peter Mac.
Allan
Thanks providing the link. Kate Burbury's talk was very informative; it is good to hear about the trials that are taking place at Peter Mac.
Allan
Re: MPN Patient education morning PMCC
Thanks Merry & Allan
You guys with an MPN should be really encouraged by the work to make clinical trials more effective and more widely available across Australia. Unfortunately - I'm not eligible for any trials, due to my co existing NHL diagnosis. Of all the news I got on April Fool's day last year, not being eligible for any clinical trial was probably the most shattering. It was a reason for deciding to move to Peter Mac to begin with, but the pooled knowledge and expert care available at this magnificent institution has made it worthwhile anyway.
Ashley Whitechurch, the haematology nurse consultant who organised the day, keeps a list of interested people with MPN and this is how I got to know of the session. Ash is the portfolio holder for both my diseases so I seen quite a bit of her! 2 weekly blood tests at the moment since starting Hydrea 3 weeks ago. Yesterday's news was good, platelets down to 471 from 820 (960 when I started it) but I can't say I've noticed much of a change in my symptoms.
When I'm in for my next blood test in 2 weeks I'll ask if her list is open to people outside PMC. There were obviously people watching the presentation by live stream on the day and from what Kate was saying, I got the impression that not all were PMC patients.
PS: my platelets yesterday were down to 471 - 820 a fortnight before, 960 a month ago when my consultant first put me on Hydrea. Haven't noticed much of a change in my achey stiff body though...maybe that's due to the exhaustion from over production of Hb? (Still unchanged at 180)
PSS: Gee it's good to share this with folks who understand!
You guys with an MPN should be really encouraged by the work to make clinical trials more effective and more widely available across Australia. Unfortunately - I'm not eligible for any trials, due to my co existing NHL diagnosis. Of all the news I got on April Fool's day last year, not being eligible for any clinical trial was probably the most shattering. It was a reason for deciding to move to Peter Mac to begin with, but the pooled knowledge and expert care available at this magnificent institution has made it worthwhile anyway.
Ashley Whitechurch, the haematology nurse consultant who organised the day, keeps a list of interested people with MPN and this is how I got to know of the session. Ash is the portfolio holder for both my diseases so I seen quite a bit of her! 2 weekly blood tests at the moment since starting Hydrea 3 weeks ago. Yesterday's news was good, platelets down to 471 from 820 (960 when I started it) but I can't say I've noticed much of a change in my symptoms.
When I'm in for my next blood test in 2 weeks I'll ask if her list is open to people outside PMC. There were obviously people watching the presentation by live stream on the day and from what Kate was saying, I got the impression that not all were PMC patients.
PS: my platelets yesterday were down to 471 - 820 a fortnight before, 960 a month ago when my consultant first put me on Hydrea. Haven't noticed much of a change in my achey stiff body though...maybe that's due to the exhaustion from over production of Hb? (Still unchanged at 180)
PSS: Gee it's good to share this with folks who understand!
-
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Re: MPN Patient education morning PMCC
Morning all... 
Annie, thank you so much for Posting the Ass. Prof. Dr Kate Burbury Talk at Peter MAC in Victoria...
Not only was it most insightful in many respects, but I also found great promise and cause for optimism in Kate's presentation.
It is always of great interest to understand how different people approach, treat and explain what MPNs are and how best for Patient's to manage their MPN conditions, symptoms and those various treatments.
I was also aware that Kate was going to be introducing some newer treatment models into the future, after talks that I had towards the close of 2019. However, I was not aware of the Trials that she mentions in this talk, and I will be talking to her myself again shortly about whether or not I might be eligible to enter one of those Trials... (?) WATCH THIS SPACE!
Anyways Annie, welcome again to MATES and thank you so much for Posting your Link to Kate's Talk from Peter MAC.
Very best wishes
Steven
Annie, thank you so much for Posting the Ass. Prof. Dr Kate Burbury Talk at Peter MAC in Victoria...
Not only was it most insightful in many respects, but I also found great promise and cause for optimism in Kate's presentation.
It is always of great interest to understand how different people approach, treat and explain what MPNs are and how best for Patient's to manage their MPN conditions, symptoms and those various treatments.
I was also aware that Kate was going to be introducing some newer treatment models into the future, after talks that I had towards the close of 2019. However, I was not aware of the Trials that she mentions in this talk, and I will be talking to her myself again shortly about whether or not I might be eligible to enter one of those Trials... (?) WATCH THIS SPACE!
Anyways Annie, welcome again to MATES and thank you so much for Posting your Link to Kate's Talk from Peter MAC.
Very best wishes
Steven
Re: MPN Patient education morning PMCC
It's my pleasure Steve.
Re-reading my posts I'm a bit repetitive, my computer is now so old I do everything on the phone which mucks up my proofing and editing.
Or maybe I'm muddle headed from the MPN?
Anyhoots, it's great to have people who understand to talk to! The only other person I ever knew with an MPN was an elderly family friend of my parents (when I was growing up) who had PV. I remember her having venesection at the original Peter MacCallum Clinic in Little Lonsdale St. and complaining of 'the itch'!
Re-reading my posts I'm a bit repetitive, my computer is now so old I do everything on the phone which mucks up my proofing and editing.
Or maybe I'm muddle headed from the MPN?
Anyhoots, it's great to have people who understand to talk to! The only other person I ever knew with an MPN was an elderly family friend of my parents (when I was growing up) who had PV. I remember her having venesection at the original Peter MacCallum Clinic in Little Lonsdale St. and complaining of 'the itch'!-
MPN-MATE Admin
- Site Admin
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- Joined: Mon Apr 22, 2019 11:38 pm
Re: MPN Patient education morning PMCC
Morning again Annie...
Yes, actually, (and I may have already mentioned this myself...) But both Katie & Warwick had never spoken with anyone in Australian with an MPN until I found them... After 16 years of dealing with all of this alone...
So thanks for your vote of confidence in MATES Forum... it is a great tool, and I have rePosted your Post here overseas on another MPN Forum in the UK, and hopefully between both Forums you will find all the help and assistance you need. It can and has been a lonely journey for myself at times too... But that is why I continue to strive for recognition here in Australia.
In the USA, Europe & the UK, where the populations ate much bigger... there's a lot more happening...
HOWEVER... We need more happening here, in my view...
We do CAfe Catchups every-so-often here in Sydney with our MPN group. Hence, if you are ever planning a visit, PLEASE let me know well in advance and we can make sure you will be able to come and join us...
These are really just 'Informal' small gatherings of MPN patients who just want to be around others who know and understand what they are all going through etc...
In any event, please just keep it in mind...
Talk more soon...
Steve
Yes, actually, (and I may have already mentioned this myself...) But both Katie & Warwick had never spoken with anyone in Australian with an MPN until I found them... After 16 years of dealing with all of this alone...
So thanks for your vote of confidence in MATES Forum... it is a great tool, and I have rePosted your Post here overseas on another MPN Forum in the UK, and hopefully between both Forums you will find all the help and assistance you need. It can and has been a lonely journey for myself at times too... But that is why I continue to strive for recognition here in Australia.
In the USA, Europe & the UK, where the populations ate much bigger... there's a lot more happening...
HOWEVER... We need more happening here, in my view...
We do CAfe Catchups every-so-often here in Sydney with our MPN group. Hence, if you are ever planning a visit, PLEASE let me know well in advance and we can make sure you will be able to come and join us...
These are really just 'Informal' small gatherings of MPN patients who just want to be around others who know and understand what they are all going through etc...
In any event, please just keep it in mind...
Talk more soon...
Steve
Re: MPN Patient education morning PMCC
Hi Annie,
Thanks for sharing the talks at Peter Mac. I am in Adelaide so it was a great way to hear what the specialists there had to say on the latest approaches to treatment and research in MPNs while not being able to attend in person. My newly found Haematologist with an actual interest in clotting disorders left Adelaide earlier this year so I am in limbo waiting to find someone new who can help me balance my ET. Any info is always welcome.
Thanks again,
SilverET
Thanks for sharing the talks at Peter Mac. I am in Adelaide so it was a great way to hear what the specialists there had to say on the latest approaches to treatment and research in MPNs while not being able to attend in person. My newly found Haematologist with an actual interest in clotting disorders left Adelaide earlier this year so I am in limbo waiting to find someone new who can help me balance my ET. Any info is always welcome.
Thanks again,
SilverET