Thoughts from the PC frontline

[Proud Wife]

Hi Jeni

Thank you for your post too. This is a very interesting thread for me.

As you probably know, I am in the bottom of the class understanding the whys and the why-fores of pancreatic cancer.

However, one point I know only too well is that because of where the pancreas sits in the body, by the time symptoms are displayed, the cancer is normally advanced or very advanced as was the case with my hubby.

Even if treatment options improve and Folfirinox, Gemcitibane with or without abraxane are replaced with more effective treatments, how is earlier detection ever going to be improved, realistically? To me personally, that's just as if not more important or do I see that wrong?

Love PW xx

[Veema]

I think early detection really is the key here...our GP was great in that as soon as Nige went and stated his symptoms, he was in for a scan and it was found asap - I know we were lucky in that respect and pancreatic cancer is often thought to be other things initially from the symptoms that are displayed and some GPs fail to pick it up at all.

What we were told when he had his whipples was that he'd probably had it for about 2 years before any symptoms at all had manifested themselves...how on earth are we going to have early detection unless there becomes some sort of routine screening like there is for bowel cancer in the over 60s, cervical cancer or breast screening etc.

[Dandygal76]

W&M - just another example of how decision making is so problematic with PC. We are told on one hand to eat healthy, reduce dark meat and leave out processed foods and we work hard to stay organic. Then I do a search of the last 7 days PC news and look....

http://medicalxpress.com/news/2016-07-drug-therapy-pancreatic-cancer-cells.html

So what do we do now? Are the health measures we put in place not the correct way for PC? We are damned if we do and we are damned if we don't. xx

[WifeampMum]

DG, yes, it is all so confusing. With this news about antioxidants being bad for PC I'd drop any antioxidant-rich food supplements but stick to a healthy, balanced diet from natural foods.

I actually took this as a good bit of news, as its another piece in the jigsaw of understanding what feeds PC and will hopefully lead to new treatments.

xx

[Dandygal76]

The problem is curcumin and bitter melon are deemed antioxidants but these have also proven beneficial in the fight against PC in other studies at high levels. It is very difficult to figure out the best way forwards on these things. I really can understand why people just stop reading this stuff like my sister - I can see the benefits of no knowledge sometimes and just increase your quality time. x

[WifeampMum]

I prefer to stay informed and then make adjustments as new information comes out. But that's just me, I've always been an information junky.

Also I believe that when it comes to taking supplements, one is just tinkering around the edges, that they won't make a huge difference for the good or bad unless you take large quantities. So hubby will continue with the bitter melon pills as the evidence is still quite persuasive (they have other benefits in addition to the anti-oxidation) and he's only taking a small dose. Everything in moderation!

xx

[Dandygal76]

I am the same W&M... however much I would like to stay ignorant to the facts sometimes - I would never be able to do it. You know in reality I believe that knowledge is power. I think you are probably right on the supplements tinkering around the edges as well... there is no comparable really to lab conditions and petri dishes or high dose pure product trials.

I did read though that bitter melon is good for blood sugar as well as fighting PC. It tastes bloody awful though and if you get the burps and digestion issues as with some treatments it is difficult to take them.

dad is not taking anything stupidly excessive and he will only take so much so we hopefully not doing anything that would be ultimately detrimental to the path that he is on. xx

[WifeampMum]

Hi all,

Have decided to have a few weeks off to recharge my poster batteries.

I wish everyone the very best in the meantime

W&M xx

[Dandygal76]

Hi W&M

I hope you are okay and I hope to speak again soon. I find it a good idea to sometimes step away and see things in a fresh light, it can all become a little intense sometimes that we forget the times before blasted PC. The summer is here and hopefully it will be a lovely hot one to enjoy. I value your input very much to this forum and find, because your hubby has a much better prognosis than most on here, that you can take a step back a little more sometimes and see the wood through the trees that perhaps some of us in a different place on the journey cannot always see. Strength to deal with that whilst still helping the likes of me who want that open debate is a special talent and one you must rest for and from at times! Pease come back soon. x

[Guest]

I will miss you but completely understand that sometimes we all need a little space xx

[Proud Wife]

Dear W&M

I'm terribly sorry if it was my comment yesterday that made you come to this decision. I'd never want to hurt or upset anyone on here and I very rarely speak out, so I sincerely hope I've not come across as confrontational. That was not the intention at all, just simply a difference of opinion but let's turn the page! Hubby always used to say what happened yesterday was yesterday's news.

I wish you some calm and enjoyable weeks recharging those batteries. I too look forward to seeing you back on here when you are ready.

Much love x

[Dandygal76]

Come back soon lovely lady... we need every perspective in this fight! x

[WifeampMum]

Hi all

I'm back, but with a caveat. I'm going to stick with doing what I do best: sharing what I've learnt from my experience of and research into PC. I've decided to leave the emotional support to the others here - you are all so much better at it than I am, so I'm sure it's no loss. In fact I seem to have a knack of putting my foot in it

To explain what's behind this decision...

While I was on my "posters holiday" I realised that I've already been on this roller coaster for 18 months yet at the moment (not that I'm complaining...quite the opposite) there's no end in sight. I'd like to feel I can continue to contribute my knowledge to the forum for a very long while to come, but contributing that AND emotional support is just too daunting. I hope everyone will understand that it's so important for me, my hubby and children that I stay as upbeat and positive as possible. For that I need to be mentally robust and I find the emotional support-giving aspect of the forum very draining.

So I don't know how this is going to work - it may end up as a failed experiment - but I'm going to concentrate mainly on information sharing in future, leaving the provision of a shoulder to cry on to those with broader shoulders than mine. I hope you don't construe from this that I don't care, as that's really not the case at all.

My best wishes to everyone

W&M

[WifeampMum]

PW, you're absolutely right, it's already last week's news. No hard feelings. My love back. W&M xx

[Guest]

Hi W&M,

I've missed you! I also think you are being hard on yourself if you think you put your foot in it. We all like to think we are robust but actually we are all subject to stresses and strains and bouts of thin skin. The written word has no inflection so can easily be misunderstood or taken awry. I am known among my friends (and less friendly people) as being very direct, some would say blunt.

I was rather pleased that you started to speak about your journey and allow us to travel with you but we must all do what is best for us and respect that we all cope in different ways. I thank you for the support you have given me and I look forward to your comments. If you want to be in touch privately then just ask support for my email, you would be most welcome.

Much love M xx

[WifeampMum]

M, I hope you all had a peaceful night. I would love to keep in touch off forum so will drop a line to the nurses next week.

W&M xx

[Proud Wife]

A warm welcome back W&M.

Hope all's well your end x

[Dandygal76]

W&M, this is the place where you should be able to speak from your mind and your heart. You didn't do anything to offend and I think it was a convergence of circumstances at the time that made you feel like that, and that was absolutely not the result of anything you wrote but other circumstances. I have already said to you that I value your input and there is nothing wrong with stark reality and truth in these matters... sometimes it is what is needed most. You also need that emotional support... we all speak from the heart and sometimes in the PC world we can read double meanings into the written word that was not intended. Welcome back... so glad you are here with us. x

[WifeampMum]

Thanks PW & DG, happy to be back. xx

[WifeampMum]

Just found this on the Cancer Research UK website, under the heading Patient Experience:

87% of Pancreatic cancer patients rate their care very good or excellent, 2014, England

Read more at http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/pancreatic-cancer/diagnosis-and-treatment#GixzTePyluLDLjBH.99

I FIND THIS VERY HARD TO BELIEVE!

W&M

[Guest]

So do I...

[Guest]

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...

[WifeampMum]

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/10.1002/ijc.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.

[WifeampMum]

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-pdac-survivors-without-surgery/

W&M xx

[Dandygal76]

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