A forum for family, friends and carers of pancreatic cancer patients

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
Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Thu Aug 25, 2016 5:41 pm

So do I...

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Thu Aug 25, 2016 5:48 pm

I see that the survey was based on people who had been admitted to hospital or were hospital day cases so one presumes that people who were not admitted to hospital but told they had inoperable PC were not included… I have not yet found the number of PC patients surveys but will keep looking to see if it is a representative sample...

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Sat Aug 27, 2016 10:28 pm

There's new research article that may be of interest to younger (under 50) PC patients and their loved ones. It claims that early onset PC (i.e. PC that occurs before the age of 50) "confers a significant survival advantage".

http://onlinelibrary.wiley.com/doi/10.1 ... 30273/full

Early onset pancreatic malignancies: Clinical characteristics and survival associations

Alicia Beeghly-Fadiel, Hung N. Luu, Liping Du, Chanjuan Shi, Dauphne P. McGavic, Alexander A. Parikh and Leon Raskin
Version of Record online: 22 AUG 2016 | DOI: 10.1002/ijc.30273

Abstract:
Pancreatic cancer that occurs before age 50 has not been well characterized. In this study, the authors compared survival and clinical characteristics in early-onset vs. typical age-at-onset pancreatic cancers. They found that in pancreatic adenocarcinoma (PDAC), early onset confers significant survival advantage. This and differences in clinical characteristics for both PDACs and malignant pancreatic neuroendocrine tumors (PNETs) support the hypothesis that early onset pancreatic malignancy (EOPM) is a distinct subset of pancreatic cancers.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Mon Aug 29, 2016 5:07 pm

Another good(ish) news story. This time it's a blog post by a PC survivor about a study on 11 long-term PC survivors, none of whom were Whippled. That is, they were long-term (5+ year) survivors despite being inoperable.

They were all treated at a US hospital that has its own unique treatment protocol which almost certainly isn't available on the NHS, but I think it still makes interesting reading.

Here's the link
http://www.pancanology.com/long-term-pd ... t-surgery/

W&M xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Tue Aug 30, 2016 7:04 pm

I will look into this more W&M but it does make the NHS frustrating.. everyone else will pick up on this and run with it and we will be the last in the queue I am sure. Dads profiling is being done and then I will discuss with the trial doctors the best options for dad and marry it up against the costs. It def is interesting reading. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Sep 16, 2016 10:51 am

As part of my quest to be as well-informed as I can about PC, on Wednesday I attended a meeting of the All-Party Parliamentary Group (APPG) on pancreatic cancer:
http://www.pancanappg.org.uk/

The theme of the meeting was treatments, and several experts gave presentations on current and new treatments including NanoKnife.

My main take-aways from the meeting were:

1. Members of the public are very welcome and anyone can ask a question at the end of the meeting.
2. It felt really good to be in the company of MPs and peers who are concerned enough about the disease to commit time and effort.
3. There were no surprises from the experts - progress in PC treatments is disappointingly slow but there are far more trials going on now than there were 5 years ago. Hot topics are immunotherapy and personalised medicine. Combination therapies are possibly more effective than mono-therapies.
4. There is still hardly any data on the efficacy of NanoKnife. The Prof needs to publish!
5. PC needs more money for research, more internationally-collaborative research, more trained specialists e.g. GI clinicians trained in PC.

I hope that the APPG-PC makes the presentation slides available - lots of really interesting stuff in them and much that the presenters had to pass over due to lack of time e.g only 10 mins was allocated to PCUK's overview of current treatments!

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Fri Sep 16, 2016 11:20 am

I know you don't do the "coping with loss" stuff so as you've posted here W&M, just thought I'd say hi. Hope you are well. I am in awe of your research btw. Both you and DG are forces to be reckoned with!

Love PW xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Sep 16, 2016 1:32 pm

Hi PW, thanks for dropping by to say hi.

I am really good thanks. Hubby is in the final month of 6 months adjuvant chemo. It's been a very long and extremely tough road for him but boy has it been worth it, as he is currently NED (No Evidence of Disease) and his CA19-9 is well within the normal range. That's after 2 major surgeries, folfirinox, radiotherapy with Capecitabine, and now Gemcitabine.

I think it's so important to get the happy stories - like mine - out on the forum as otherwise newbies will think it's all terribly grim and that it's downhill all the time for everyone here. When things are going well (as they are for me) I suspect people tend not to post, either because they want to get on with life and forget about this place, or they're like me and are superstitious about posting good news. I just don't want to jinx things. I know it's completely illogical and unscientific but I find it very hard to shake off that feeling. So thankyou for coaxing my good news story out of me. I do hope it's given some readers hope.

And yes, I've decided to avoid the 'coping with loss' stuff as I've had my fair share of exposure (having lost my Mum in March) and as hubby is very much alive. For which I thank my lucky stars pretty much every waking moment of every day.

I hope you are OK PW, I think about you a lot.

Love
W&M xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thoughts from the PC frontline

Postby Proud Wife » Fri Sep 16, 2016 4:54 pm

WOW! Lovely, lovely post W&M! You are absolutely right, happy stories are few and far between but go a massively long way to show there is always hope. I am not going to say too much about your husband's condition, you will know everyone of my unsaid words because I too worry about tempting fate, let's just say he's amazing but he's also amazing because of your love and devotion too!

Sadly enough, I waited until January this year before I joined the forum and as soon as I posted a "happy story" to give hope to others about to try folfirinox, unbeknown to us at the time, that's when progression started. I know this forum had nothing to do with it but...!

You are absolutely right, why should you ever go to "coping with loss", every single one of us on here know you care but your priority is your hubby first and foremost. I hope and pray never, ever to see you over there. You do far more than your fair share by keeping everyone updated with developments in the fight against PC.

Have a great weekend xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Wed Sep 21, 2016 11:17 am

Recently Dandygal mentioned on her thread about the prognosis for PC sufferers improving significantly once they've survived one year or so after diagnosis.

There are plenty of articles about this on the Internet - the concept is called "conditional survival". Here is a fairly user-friendly one:
----------------------------

Title
Cancer prognosis improves with time: StatsCan
(April 2011)

http://www.cbc.ca/news/health/cancer-pr ... -1.1004523

"The prognosis for many Canadian cancer survivors tends to improve, sometimes substantially, after they survive a year or more, a new Statistics Canada report suggests. [snip]
The good news in this story is, for many, many patients, once they have gone for two or three or four years after cancer diagnosis, their survival compared with the general population is really dramatically better than it was at that time they first had that chat with their oncologist. [snip]
'Conditional survival data provide more accurate prognostic information about how the risk of death changes over time,' the report's authors said. [snip]
The estimated five-year survival rate for people with cancer of the pancreas is six per cent at diagnosis, but it's 28 per cent among one-year survivors and 88 per cent among five-year survivors."

----------------------------

It should be noted that the 28% 5-year survival figure covers all one-year survivors i.e. it includes those who have been resected and those with a neuroendocrine tumour.

For those who have been living with PC for 1 year+ and want to see in more detail what this might mean for their prognosis, MD Anderson have provided a calculator here:
http://www3.mdanderson.org/app/medcalc/ ... reascancer

It's important to remember though that these are still just statistics and everyone is an individual - particularly, it seems, when it comes to PC.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thoughts from the PC frontline

Postby Dandygal76 » Thu Sep 22, 2016 11:00 am

Mmmm... I keep hovering over the PC survival calculator and all I can hear in my ear is my other half warning me last night not to do it! We just need to keep aiming for January! We are 3 weeks now from next scan results, where does the time go. Glad you are doing okay W&M, you know we are all routing for your family and here for you if you need us. x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Thu Sep 22, 2016 11:51 am

...and I'm rooting for you and yours, and everyone who comes here. This forum is an amazing place, so much compassion and understanding.

The calculator is a pretty crude tool so if you do decide to have a look, bear that in mind. For example it's based on fairly old data so the figures don't take account of the newer treatments like Folfirinox, Abraxane. And your Dad could be on the trial drug and that might be giving the disease a massive bashing.
Last edited by Wife&Mum on Fri Sep 30, 2016 3:00 pm, edited 1 time in total.

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Sep 30, 2016 2:59 pm

Hubby and I met with our MP at his surgery this morning. He agreed that more could be done to improve the situation for PC sufferers and he is going to join the APPG-PC (All Party Parliamentary Group on PC). We're so pleased that he cares enough to take an interest.

We're also celebrating because it was hubby's last chemo session this week. Hopefully next week's scan will show NED (No evidence of disease) just like his last scan did back in April.

W&M xx

Marmalade

Re: Thoughts from the PC frontline

Postby Marmalade » Fri Sep 30, 2016 3:11 pm

Fantastic! Have a wonderful weekend both of you. Xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Thoughts from the PC frontline

Postby Wife&Mum » Fri Sep 30, 2016 6:33 pm

Thank you M. Big hugs. xx