MPN Specialist

[Ozland]

Hello All,
This possibly has been discussed in the past. I am looking for an MPN Specialist

I'd like to introduce myself as am new at this forum

My name is Leon and I have been diagnosed February 2017 with ET CALR Type 1

Currently am on quarterly blood tests at POW Hematology with platelets hovering around 500 and am on 12 Hydrea per week

I would like to actually talk to an MPN specialist as until now have had no chance to do so

Hope you can advice

Thank you

Leon


TEST 21 FEBRUARY 2017 ET CALR TYPE 1 Leu367Thrfs*46 CALR Exon 9 52bp DELETION used penthrox inhaler Methoxyflurane=inaffective Gene: CALR Mutation: NM_004343.3: c.1099_1150del; p.Leu367Thrfs*46

[MPN-MATE Admin]

Evening Leon...

Welcome to MATES and I am glad to find your first Post up by way of Introduction. I am sure that a few of the others will be along in due course to offer some support and provide some advice via their own MPN journey experiences etc.

Thank you also Leon, as I recently noticed that you have made a generous donation to the Foundation for the very important MPN Research work that we are all endeavouring to achieve into the not too distant future... Hopefully, from small things, big things can grow...

Not sure if I have mentioned this to you before... But the MS Society, started the Sydney to the Gong Cycle Ride 39 years ago. Last year's Ride, I also took part in, and the funds raised were just shy of 3 Million for the weekend's effort...

These days, the MS Society marketing machine, is a smooth operation, and one that I would love to be able to emulate at some stage into the future... One of my smaller dreams for our Foundation's success...

By the way Leon, if you are interested, I do have quite a few Peer-reviewed & scientific Papers concerning the CALR Types of Mutations, and I am happy to email them to you if you would like...? Just let me know...

I note that you state you are CALR Type1, which is the Deletion, and I am CALR Type2, which is an Insertion. It is presumed that Types 1 & 2 make up approximately circa 80% of all CALR instances, however, there are over 50+ in number...

Thus far, through my own Research of Papers by others, much seems to be in conflict as to the different attributes given to Type 1 & 2. There are also many sweeping Statements firstly, that One (1) is more benign than Two (2), and then the converse is proposed by other so-called learned experts...

There is a great deal to consider, in my view... As there are always a great many other variables that should also be included into the equation. Unfortunately, there appears to be an over reliance upon generalisations, again in my own view...

Anyways, happy to share those Papers if you like...?

Hopefully, a few of the others will be along shortly...

Thanks again Leon and I will be in touch of course...

Steve

PS. Cool you worked out how to apply the Avatar Pics too...

[Ozland]

Thanks a lot Steve!
Yes please appreciate all research you have dug up ( hope I will understand)
In regards to marketing
I know you have best brains to advice
I just thought maybe there is a way to make MPN more known in the public
First thought .org may make people think it’s a “larger” organisation then .com
Also maybe we can get red pens with words “MPN-Mate.com foundation”
MPN rare blood cancer charity- (since a lot of people don’t even know it’s cancer)
Give away the pens- should be a small charge to buy/print
Same with rubber hand bands
These should start some donations
Hope I am not being too forward with my opinion
Leon
Can I send the article To you this way in reply?

UPDATE:
some pen manufacturers-https://www.alibaba.com/countrysearch/C ... leryList=G

https://www.made-in-china.com/products- ... g_Pen.html
there is even a banner pen looks great and informative= Flyer Advertising Pen with Customized Logo Pull out Banner Pen

nutrition for MPN
NUTRITIONFORMYELOPROLIFERATIVENEOPLASM(MPN) PATIENTSCarolyn Katzin, MS, CNSIntegrative Oncology SpecialistUCLA Simms Mann Center for Integrative Oncologywww.simmsmanncenter.ucla.edu
https://static1.squarespace.com/static/ ... tients.pdf

[MPN-MATE Admin]

Hey Leon...

All thoughts and ideas are always most welcome...

However, we do have some Marketing on the website, it's called 'MATES SHOP', and some merchandising is already available, please see:
https://www.mpn-mate.com/mates-shop/

The main thing I had out there were Wristbands w/ the website address on them. Prior to the CV-19 pandemic's inception, I was out w/ signage at various locations trying to gain support for my various Fundraiser Rides (FRs), and a few brochures and signs etc.

Unfortunately, since that time, CV-19 has cancelled every FR idea I have had before it started... So I am now looking at a few new things... But all of those efforts require funding, and to date, it has all just come out of my own pocket w/out claiming any rebates for tax offsets etc.

Hopefully, I might be able to revisit the 'Ride around Australia', Post CV-19? We shall see... That might be a while from now though too... What with border restrictions as dynamic as tey continue to be at the present etc... (?)

The Brochure for the around Australia, (Guinness World Record breaking attempt), was almost printed about three (3) different times... As it has turned out, that would have been a waste of resources too...

A great deal of marketing and work went into creating that 16 page Sponsorship Brochure...

We also have cycling Jerseys, Shorts & Caps... (Let me know if you want one for yourself & I'll get you MATES rates )

Of course, as a Registered 'NFP' Foundation, I could make claims for rebates, but that in my mind kind of defeats the whole purpose of what we are all trying to achieve, so to speak...

Pens are a great idea, all the same, and I wonder how they might compare in cost w/ the Wristbands? Obviously, a Pen has a reason to be kept a while longer too I suppose, it's useful ...

Anyways, we' can talk more about this anytime Leon...

I will email you a few articles to get you started, and please feel free to reply by email whenever you like...

Speak more again soon...

Best

Steve

PS. Don't forget too Leon, your donation is fully tax deductible, for anything over $2.

[Merry]

Hi Leon

Welcome to the Mates Forum. I’m in West Australia. No MPN specialists here. I’m Jak2 ET and see a doctor at the haematology dept at a hospital in Perth. They are just monitoring at the moment as my platelets are around 400. I stopped taking Hydrea last October and haven’t had any significant rise in platelet numbers. Still taking Apixaban, a blood thinner and feel much better off the Hu. I was diagnosed 2015 but had a venous thrombosis the following year. Hopefully someone will point you to a specialist near you.

Great to hear your ideas on fundraising. All ideas are very welcome as Steve has said. Anyway, must away for dinner. Again, welcome and look forward to hearing more,

Regards, Merry

[KatieB]

Hi Leon,
My name is Katie. I have ET J+ and was diagnosed in 2005. Have been through most of the medications and am now on Peg Interferon,

Steve may have mentioned that my consultant is one of the few MPN specialists in Australia. Dr Forsyth is a very highly qualified and intuitive haematologist and has changed my life around after a nasty experience with HU.
She is based in Wyong or Gosford but I do know she is very busy. I am sure that she will see you if you get a referral from your GP.

If you would like to contact me, I would be happy to talk over with you anything you feel I could help with. I can relate to you my own experiences but Steve is much more clued up on the medical side of things.

My contact number is: Available by asking Steve for my personal contact details, as he has advised it best NOT to have my mobile number available directly via MATES Forum etc.

However, I am very happy to receive a call anytime to tell you more about how well Pegasys' Interferon is working for me, and also about Dr Cecily Forsythe. Just Post here that you'd like to and Steve will arrange it for you I am sure...

All the best to you anyway. We all try to help each other in out little family MPN group,

Katie

[Ozland]

Thank you all for replies and kind comments.

Steve have mentioned Dr Cecily Forsyth - Gosford Haematologist

I have also found a list:

https://mpnforum.com/list-hem/

Australia Kogarah NSW Prof. A. Manoharan
Australia Adelaide South Australia Professor Bryone Kuss
Australia Melbourne Victoria Dr. Kate Burbury
Australia Melbourne Victoria Dr Robin Filshie
Australia Melbourne Victoria Assoc. Prof. Stephen Opat
Australia Melbourne Victoria Prof. H. Miles Prince
Australia Melbourne Victoria Dr. Annabel Tuckfield

Unfortunately all of them are not in Sydney

[MPN-MATE Admin]

Morning Leon...

Yes, we also have those Lists, (so-called MPN Specialists), on our MPN Services page.

Personally, I believe that there is a palpable difference between a Haematologist & a true MPN Specialist. Having said that however, and not wishing to be unfair in any way, I have not met the few others out there in Australia, or spoken w/ them in order to determine for myself the level of their individual MPN knowledge and capacity etc.

You'll note that we also list everyone in Australia that has anything to do w/ MPNs, pity that they do not reciprocate, as in my view... We are all in this together, and nobody owns a Franchise on rare blood cancers of any description which of course includes MPNs...

https://www.mpn-mate.com/services-4/

Best wishes, stay safe...

Steve

[Ozland]

Thank you Steve,

Somehow I have overlooked this list (brainfog? )

Thank you for that

Leon
P.S. I have edited my initial post with UPDATE (sorry should have just submitted reply here)

[MPN-MATE Admin]

Evening Leon...

All good buddy... Not a problem...

Thanks for the Links to the Pens too... I will try to spend some time on them shortly to try to make a comparison of sorts etc...

Excellent Leon...

Best

Steve

PS. Leon, not sure what the 'Article' is that you been mentioning, however, please feel free to fill me in what it's about etc. Cheers. S

[Kinsale]

Hi Leon. I have ET and am Jak2+ and like Katie am under the care of Cecily Forsyth. And have been since I was diagnosed in Sept 2014. Cecily has deep knowledge on all the MPN’s and she is also a good communicator in the she ensures you understand all the issues at hand when discussing treatment options etc. I wouldn’t have anyone else managing this aspect of my life. Cheers. Mark

[Alkemist]

Hi Leon and welcome
I have ET (CALR exon 9 indel mutation).I was on Hydrea for 13 years but have transitioned to Pegasys (PEG Interferon) during the last year. My platelets are currently fairly stable in the 700-850 range. I see a Sydney haemotologist and haven't seen an MPN specialist, although I did seek a second opinion before switching medications.
Any questions, just ask.
Cheers
Allan

[Jaqi]

Hi Leon,
My name is Katie. I have ET J+ and was diagnosed in 2005. Have been through most of the medications and am now on Peg Interferon,

Steve may have mentioned that my consultant is one of the few MPN specialists in Australia. Dr Forsyth is a very highly qualified and intuitive haematologist and has changed my life around after a nasty experience with HU.
She is based in Wyong or Gosford but I do know she is very busy. I am sure that she will see you if you get a referral from your GP.

If you would like to contact me, I would be happy to talk over with you anything you feel I could help with. I can relate to you my own experiences but Steve is much more clued up on the medical side of things.

My contact number is: Available by asking Steve for my personal contact details, as he has advised it best NOT to have my mobile number available directly via MATES Forum etc.

However, I am very happy to receive a call anytime to tell you more about how well Pegasys' Interferon is working for me, and also about Dr Cecily Forsythe. Just Post here that you'd like to and Steve will arrange it for you I am sure...

All the best to you anyway. We all try to help each other in out little family MPN group,

Katie

Hi, Katie, I have heard from Steve about you and your seeing Cecily. I’m very glad I’ve finally found you. 10 days ago I was diagnosed with ET J+, its since been a roller coaster as I’ve learned that my haem was pretty shocking. I have left the bottle of HU he prescribed me unopened! I’m terrified of having a stroke but I’m also terrified of that medicine.....relying on my intuition atm. Anyway, I find it really time consuming writing, replying and finding knowledge on line, I’m generally wiped out at the end of the day so I was hoping we could have a phone chat as yesterday I sent a referral to Dr Forsythe. So if you are up for that it would be greatly if Steve could pass on your number. Its great to here you are faring well with the changed meds.
All the best to you,
Jaqi

[KatieB]

Hi Jaqi,

Please do get my number from Steve and phone me. Leave me a message and contact number if I am not in at the time.

Talked to Cecily Forsyth by Zoom yesterday and she is pleased with my progress on Peg. She is so nice and will reassure you. You do need meds to control this disease but don’t be frightened.

Best wishes
katie

[Jaqi]

Hi Jaqi,

Please do get my number from Steve and phone me. Leave me a message and contact number if I am not in at the time.

Talked to Cecily Forsyth by Zoom yesterday and she is pleased with my progress on Peg. She is so nice and will reassure you. You do need meds to control this disease but don’t be frightened.

Best wishes
katie

Thanks very much Katie, will do. I will call you after Tuesday as I’m seeing Prof Manoharan that day and can pass on any info that may be helpful. I am hoping to start the Peg, but I guess it depends on my risk assessment as I know it can take some time to start working.

Best wishes
Jaqi

[KatieB]

Look forward to hearing from you Jaqi.

[Jaqi]

Look forward to hearing from you Jaqi.