A forum for any other issues around pancreatic cancer

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Pancreatic Cancer Action Network

Postby Slewis7313 » Fri Jan 17, 2014 5:53 pm

I am a Facebook friend with Pancreatic Cancer Action Network in the States and today they posted a recent 1 hour webinar by an American specialist. It is amazingly informative and well worth sitting down for an hour to watch on Youtube. There are some differences in how they do things across the water, but the lady broaches on many aspects of what we regularly discuss, including Abraxane (which she refers to as Paclitaxel) Some of the information relates to very specific survival times, which are not easy reading, but overall worth a read.

http://m.youtube.com/watch?v=t6EtzNSNCY ... 3Dyoutu.be

Steve
X

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Pancreatic Cancer Action Network

Postby MSH » Fri Jan 17, 2014 6:35 pm

I saw this from another link and agree it is very good. I was particularly struck by two things. The use of chemotherapy before surgery and the use of chemotherapy to improve the quality of life and not necessarily its duration.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Pancreatic Cancer Action Network

Postby Slewis7313 » Fri Jan 17, 2014 7:01 pm

She really manages to pack a lot into 1 hour. I wondered if you had seen this after the recent reference to 'borderline cases'.

Quite impressive!

Steve

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Pancreatic Cancer Action Network

Postby InfoForMum » Fri Jan 17, 2014 10:55 pm

Very comprehensive and for me personally gives comfort I've looked into the right things and interpreted what I've found correctly. For those without enough time, health or web research skills to dig through to this level of info I'd recommend a listen. Depending on how much about survival times you really want to know right now. I knew the average survival time after surgery, but it never fails to disappoint me when I read it again.

Something I keep in mind is that those 5 year survival rates are for folk who were diagnosed 5 years ago. Sounds obvious I know, but it was before Folforinox, before "borderline resectable" was a category and before pre-surgery chemo and radiotherapy started being tried for those patients to try and enable resection. Heck, even before GemCap as a combo was in wide usage.

Not to mention before RAS, IMM-101 vaccine, hormone therapy and other trials were more than a phase 1 twinkle in a researchers eye.

Power to the elbows of charities like ours, the innovators and to the brave clinicians and patients helping push these boundaries!

Sarah

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Pancreatic Cancer Action Network

Postby EmmaR » Fri Jan 17, 2014 11:41 pm

Steve thanks for that link I listen to it with great interest , she does tell it as it is sadly my Jon was diagnosed at an advanced stage with spread to liver ,lung and peritoneum and did not have any chance of treatment and passed away two months after diagnose with morphine being his only friend ! We would certainly have tried any of the available treatments given the chance seems the only really hope we have is research and more research ... And people like you and Sarah who keep us so up to date with everything that's relevant to this awful disease .

Best wishes to you all fighting PC and to the ones supporting the fighters .
EmmaR x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Pancreatic Cancer Action Network

Postby InfoForMum » Fri Jan 17, 2014 11:53 pm

I read your story and it broke my heart Emma. You are so generous coming on here wishing others well and I hope you can see a time further down the track when the hole in your life he left might fill with some new good memories.

You've also reminded me the thing I left out. Roll on better earlier tests and some kind of workable screening to avoid such late and heartbreaking diagnoses!

Take care,

Sarah
XXX