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Pancreatic cancer (for a friend)


mikthe20

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Just now, mikthe20 said:

Indeed. Mate of mine's dad was apparently climbing the walls and screaming in agony during his last few hours despite being on massive morphine doses and sedatives. I'd have been tempted to ask the nurse to leave the room and smother him with a pillow to put him out of his misery.

Yeah I didn't see granny in the final two days but apparently it got even worse again; and like your friends dad they tried filling her with as much morphine as they could and it did nothing. Horrible thing for my Dad to have his last memory of his mother like that. Given the trivial shit we spend time talking about as a society, this is the kind of thing that really should be faced.

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2 minutes ago, mikthe20 said:

 

Cheers TMT, and so sorry to hear about your dad. He and his partner have been very sensible and already have a hospice lined up - un/fortunately an elderly friend of their's needed on last year and it was very good and local. His partner is very good, although she's not exactly in the best health herself so she'll need to take breaks, which is part of going up at the weekends in our thinking. Oh, and I certainly took the piss out of him and will continue to do so!

No kids fortunately.

 

Not married? This can be a problem. I have heard many a tale of insensitive, heartless medics telling someone that they are not the husband or wife and hence have no legal right in a life and death situation. At the most awful of times the last thing someone wants is to be trying to fight with some b*tch of a nurse who has just replaced the lovely nurse who has gone off-shift.

Sorry to be blunt, but these things need to be thought and talked about. Palliative care is so different in different parts of the UK. Some places are wonderful and others are sh*te. It often comes down to individual medics as, as I mentioned above, you can have wonderful medics helping you one moment and completely nasty, vicious people, (Yes, I think the NHS is full of some really screwed up people who use their jobs as an opportunity for their own vile ways.), who literally take a delight in being as awful to people at their most vulnerable of times.

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My dad died of this. The only few glimmers of hope I found were if it was in the tail of the pancreas I think, and I did find some procedure in Germany that was making headway. Might be worth researching but sorry I can't remember what it's called and don't want to particularly look it up as it'll bring back a lot of bad memories. 

The prognosis is very poor and you have to be realistic about it. It also deteriorates very very quickly ie days, which is perhaps a blessing in disguise once you see how awful it is. Good luck to your friend and his family.

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5 minutes ago, The Masked Tulip said:

Not married? This can be a problem. I have heard many a tale of insensitive, heartless medics telling someone that they are not the husband or wife and hence have no legal right in a life and death situation. At the most awful of times the last thing someone wants is to be trying to fight with some b*tch of a nurse who has just replaced the lovely nurse who has gone off-shift.

That's a good point. They probably have some sort of power of attorney but I ought to check. I did suggest they get married just so she could get widow's pension later in life (at which point I took the piss and told him she'd probably marry a rich bloke with a huge knob next anyway!).

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Here is the link. https://www.heidelberg-university-hospital.com/diseases-treatments/endocrine-and-metabolic-diseases/diseases-of-the-pancreas/

 

Speak to them sooner rather than later if you think it's worth a try. I was planning a visit with my dad but he became too ill to travel within a few weeks. in fact I think he had passed away not even 2 months after diagnosis. 

sorry to be a downer but yhe NHS was completely inept at handling it in our experience.  the NHS saying it's too late for whipple procedure doesn't mean it actually is too late outside the UK. etc etc. 

 

 

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6 minutes ago, spunko2010 said:

Here is the link. https://www.heidelberg-university-hospital.com/diseases-treatments/endocrine-and-metabolic-diseases/diseases-of-the-pancreas/

 

Speak to them sooner rather than later if you think it's worth a try. I was planning a visit with my dad but he became too ill to travel within a few weeks. in fact I think he had passed away not even 2 months after diagnosis. 

sorry to be a downer but yhe NHS was completely inept at handling it in our experience. 

Thanks Spunko! That looks amazing. Will read up on it and pass it on to his missus. Much appreciated.

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20 minutes ago, mikthe20 said:

That's a good point. They probably have some sort of power of attorney but I ought to check. I did suggest they get married just so she could get widow's pension later in life (at which point I took the piss and told him she'd probably marry a rich bloke with a huge knob next anyway!).

 

Power of Attorney in a medical sense is now very expensive to take out. It is also not at all practical in a life and death situation where you want your partner to have X, Y or Z RIGHT NOW and some arrogant doctor or nurse with some god complex - of which the NHS is full - decides to completely ignore things. You are not going to have the time to get a lawyer in - not that a lwyer could do anything at that point - and the medics know this.

Nothing will change until something awful happens, is later challenged in court and some doctor is struck off - and that is not going to happen ever.

I think this is a big reason why you hear so many stories of dying people getting married. It solves all sorts of practical legal problems and is, frankly, cheaper than the newest POEs.

Doe he have elderly parents? He might have left whatever he has to them in a will? How would he leave his stuff now - to his partner or to his parents. Sorry to talk about these things but they are things that are going to need to be addressed... whilst he is being ill.

 

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I have been reading a lot in the past week about theraputic doses - i.e. mega doses - of Vitamin K2 MK-4 & MK-7 regarding cancer.

I also now have a few bottles of turmeric in my fridge and try to add that to any curries / meats that I eat after reading about the curcumin, the pigment in turmeric that makes curry powder yellow, which is supposed to have good cancer fighting properties. A friend's dog was given a few weeks to live back in the spring - prostate cancer - and they began lacing his food with turmeric and the dog is still here.

 

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14 minutes ago, Shamus said:

This site may be useful if you have not already found it: link and a fairly recent article here.

Cheers. Had seen the first link (he's in one of the main centres so that's good), but not the second, which looks interesting.

11 minutes ago, The Masked Tulip said:

I think this is a big reason why you hear so many stories of dying people getting married. It solves all sorts of practical legal problems and is, frankly, cheaper than the newest POEs.

Doe he have elderly parents? He might have left whatever he has to them in a will? How would he leave his stuff now - to his partner or to his parents. Sorry to talk about these things but they are things that are going to need to be addressed... whilst he is being ill.

 

Cheers. I think he's recently taken care of his will. They're very practical and I think they'll handle this well, but I will check, thanks.

7 minutes ago, The Masked Tulip said:

I have been reading a lot in the past week about theraputic doses - i.e. mega doses - of Vitamin K2 MK-4 & MK-7 regarding cancer.

I also now have a few bottles of turmeric in my fridge and try to add that to any curries / meats that I eat after reading about the curcumin, the pigment in turmeric that makes curry powder yellow, which is supposed to have good cancer fighting properties. A friend's dog was given a few weeks to live back in the spring - prostate cancer - and they began lacing his food with turmeric and the dog is still here.

Cheers TMT, sounds interesting and I'll do some reading up and pass it on.

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My grandmother died of this a year ago, only a month after diagnosis. I agree Germany is the place to go for cutting edge treatment. If he is too ill for that to be an option gemcitabine is a 'gentle' chemo and should give him a few extra months. My grandmother suffered horribly, it really is an awful disease. As well as being caught late there are certain properties of this cancer that make it so hard to treat, the mutations that make it spead occur early and the tumour is relatively avascular making it hard to get chemo into it. My grandmother wanted to go to Belgium for assisted suicide but was too ill to travel.

Its interesting and sad that so many on this forum have been affected.

More funding should go into this cancer given the lack of progress.

 

 

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Sorry to hear that. As you have researched, pancreatic cancer has a very poor survival rate, especially if it has spread.

My suggestions would mainly be around planning for the future - if he's got some things he'd like to do, then do them now before he becomes too unwell. Sort out where he'd like to go if he does deteriorate. Discuss Advance Directives.  These kind of things are often overlooked, as people are understandably trying to stay positive and not contemplate what might happen if things don't go too well.

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My genuine condolences to your poor friend, mikthe20; I have a friend who's wife died from a comparably awful cancer in her stomach that spread from her kidneys (or vice versa) and it was a frighteningly quick death at the relatively young age of 61. 

This sort of thing scares me enough to want me getting round to having a colonoscopy/endoscopy test in the next year. 

Pancreatic cancer (and other related cancers of the digestive tract, ducts and glands) has been notoriously potent in the face of entirely inadequate medical treatment for decades and the survival rate until today remains virtually nil (with only agonisingly slow improvement most recently, crawling up from 5% to 7%) and just in this decade are they starting to develope any practical answers (outside of the last ditch Whipple procedure) to this horrific affliction. 

Please donate to Pancreatic Cancer Action and I sincerely hope your friend enjoys at least one more Christmas, mikthe20.

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17 hours ago, mikthe20 said:

He has secondary cancer of the spine (he only went to the GP in October with back pain!).

Lost my dad to cancer last year, the doctors explained to us that secondary cancer meant things were going downhill quite significantly. May not be the case here as there are always exceptions but you probably don't have a long time.

In my dads case we took him to the doctor with a stomach ache on tues 27th jan, found out he had cancer on thursday 29th, got told the seriousness on 1st feb and he died on the 6th, so time could be soooooo much shorter than you can possibly imagine.

So my advice would be don't waste a second, talk to him, be there for him but most of all try to be yourself around him, i doubt he wants everyone being all sad around him, so talk honestly and frankly like I hope you have done with each other before all of this

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10 hours ago, mikthe20 said:

That's a good point. They probably have some sort of power of attorney but I ought to check. I did suggest they get married just so she could get widow's pension later in life (at which point I took the piss and told him she'd probably marry a rich bloke with a huge knob next anyway!).

Not a bad idea. The pension bit, not you taking the pee. :)

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11 hours ago, Turned Out Nice Again said:

Pancreatic is a ******* by all accounts and I'm not sure medical science can offer much hope of a cure beyond a Whipple procedure - radical surgery only suitable in a minority of cases.

In his position I'd be tempted to follow Wilko Johnson's example of refusing chemo and instead explore plausible alternative therapies such as DCA and dietary approaches. What has he got to lose?

The only thing he really has left, time.

Firstly, terrible news and I feel for you and your friend. 

The type of cancer Wilko Johnson had, while pancreatic was a different form and ultimately treatable with surgery. For him the option was give chemo a go and if it doesn't work then operate, he chose not to do the chemo. While it's a good story the reality is he needed radical life saving surgery, he didn't just go off and eat carrots for 6 months and it all cleared up. I'm not trying to make light of it, but he ultimately had the option of not doing chemo.

As others have said, as he now has secondary cancer then the reality is that it's very very unlikely he will recover. 

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Thank you everyone for your thoughts and kind words (can't quote on my mobile as it seems completely bugged - about time they fixed that). I've passed on details of surgery - he's been told no point operating by the hospital so this is worth exploring further with alternative providers IMO. He's already booked to do chemo next week and it's giving him some hope so I'm reluctant to suggest he skips that.

Rozza - so sorry to hear about your dad, that's a terribly short time. Thank you for sharing that.

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8 minutes ago, mikthe20 said:

He's already booked to do chemo next week and it's giving him some hope so I'm reluctant to suggest he skips that.

If he's doing chemo, I know he's already lost weight and it might seem counter-productive but I'd look at Dr. Valter Longo's work on modified-fasting for a couple of days before and after the sessions to enhance their effects and protect his immune system. He can feed up afterwards.

 

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7 hours ago, Big Orange said:

My genuine condolences to your poor friend, mikthe20; I have a friend who's wife died from a comparably awful cancer in her stomach that spread from her kidneys (or vice versa) and it was a frighteningly quick death at the relatively young age of 61. 

This sort of thing scares me enough to want me getting round to having a colonoscopy/endoscopy test in the next year. 

Pancreatic cancer (and other related cancers of the digestive tract, ducts and glands) has been notoriously potent in the face of entirely inadequate medical treatment for decades and the survival rate until today remains virtually nil (with only agonisingly slow improvement most recently, crawling up from 5% to 7%) and just in this decade are they starting to develope any practical answers (outside of the last ditch Whipple procedure) to this horrific affliction. 

Please donate to Pancreatic Cancer Action and I sincerely hope your friend enjoys at least one more Christmas, mikthe20.

I did read that by 2050 Pancreatic Cancer is likely to be the most common cause of death of any other cancer, in the developed world. One of the few cancers that are increasing and nobody seems to know why, although there are some plausible explanations like increase in red meat consumption etc:

http://www.pancreaticcancer.org.uk/riskfactors#meat

Not sure where in the UK your friend is based but I hope it's not using NHS Wales, they are abysmal.

 

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4 hours ago, Turned Out Nice Again said:

If he's doing chemo, I know he's already lost weight and it might seem counter-productive but I'd look at Dr. Valter Longo's work on modified-fasting for a couple of days before and after the sessions to enhance their effects and protect his immune system. He can feed up afterwards.

Cheers - interesting concept and video.

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There are plenty of stories doing the rounds of high-CBD Cannabis oil delivering miracle cures. Sounds like ****** to me, but... To be honest if I didn't have a realistic chance of recovery via conventional treatment, I think I'd rather go to Colorado where it's legal and spend three months skiing, and try out the treatment. Feeling good and having some slim hope of a Hail Mary save might make life bearable for a while at least. 

http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/

Quote

Clinical research

But that’s the lab – what about clinical research involving people with cancer? Results have been published from only one clinical trial testing whether cannabinoids can treat cancer in patients, led by Dr Manuel Guzman and his team in Spain. Nine people with advanced, terminal glioblastoma multiforme – an aggressive brain tumour – were given highly purified THC through a tube directly into their brain.

Eight people’s cancers showed some kind of response to the treatment, and one didn’t respond at all. All the patients died within a year, as might be expected for people with cancer this advanced.

The results from this study show that THC given in this way is safe and doesn’t seem to cause significant side effects. But because this was an early stage trial, without a control group, it’s impossible to say whether THC helped to extend their lives. And while it’s certainly not a cure,  the trial results suggest that cannabinoids are worth pursuing in clinical trials.

There is also a published case report of a 14-year old girl from Canada who was treated with cannabis extracts (also referred to as “hemp oil”), but there is limited information that can be obtained from a single case treated with a varied mixture of cannabinoids. More published examples with detailed data are needed in order to draw a fuller picture of what’s going on. [Updated 26/03/14, KA] 

Unverified anecdotes about ‘cures’ do little to help progress towards more effective treatments for patients on a wider scale – even if they do get published in newspapers, they aren’t strong scientific evidence. In order to build a solid evidence base that might support future applications for funding or clinical trials it’s important to gather together detailed information about individual cases.

Here in the UK, Dr Wai Liu at St George’s University is researching cannabis and cannabinoids for treating cancer (we are not currently funding his work). You can read about some of his recent work here.  He is happy to collect individual stories from UK patients, and can be contacted by email. In the US, the Office of Cancer Complementary and Alternative Medicine gathers similar stories for their Best Case Series.  [Updated KA 21/07/14]

A handful of other clinical trials of cannabinoids are currently being set up. We are helping to support the only two UK trials of cannabinoids for treating cancer, through our Experimental Cancer Medicine Centre (ECMC) Network funded by Cancer Research UK and the devolved Departments of Health. One early-stage trial is testing a synthetic cannabinoid called dexanabinolin patients with advanced cancer, and the other is an early-stage trial testing a cannabis extract called Sativex for treating people with glioblastoma multiforme brain tumours. [Edited to add more information about the trials – KA 22/08/12, KA 24/03/14]

 

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On 12/14/2016 at 3:05 PM, mikthe20 said:

Went to see a good friend at the weekend who's been diagnosed with pancreatic cancer. He's pretty stoic and matter of fact about it and knows his time's limited, but not by how much - he's a lovely guy, in his 40s. Having looked online it seems he's pretty much fecked and likely to cop it in the next couple of years and may not even see out the next 6 months. Apparently only 5% make it to 5 years as it seems treatment of pancreatic has not progressed like for other cancers. He's on radiotherapy and starting chemo shortly. He has secondary cancer of the spine (he only went to the GP in October with back pain!).

There are a lot of people on here with wide life experience and alternative views and I thought I'd ask if anyone has got any experience or suggestions on either treatment of it or, most probably, how to deal with the effects of the treatment or illness. I've seen two people die of cancer before at close quarters so I know what to expect in terms of deterioration and effects of chemo. I've noticed he's lost around a stone in weight already since I last saw him so any suggestions on diet would be good. His partner is very supportive so he's lucky he's got her.

Hi all, first post here. Been lurking on this site for many years, reading only. Thought I'd post today as I do have some info that might be useful for your friend.

Have a look at his free pdf:

http://morgellonsdiseaseawareness.com/yahoo_site_admin/assets/docs/Cancer-Free_4th_Edition.6264839.pdf

The most important chapter is five. There are a bunch of simple and cheap things you can do which I believe may make a difference.

The other thing I would recommend is taking Essiac. This is a tea made from four herbs. It's not expensive, about £20 a month. I recommend the one below because it is one of the few made properly (with sheep sorrel roots). I have no connection to the owner of the site.

http://qualifiednaturopath.com/products/1200ml-organic-herbal-decoction-not-branded-essiac-exact-rene-caisse-recipe

I don't have any personal experience of any of these therapies but I did do some extensive research/reading when I thought my mum might have cancer. In my opinion there is most certainly something in it.

I would also suggest your friend look at the Gerson therapy. This is essentially vegetable juicing. There is much suppressed evidence to suggest this really does work. It would seem that many of our immune systems are working sub-par due to our diets. If you flood the body with nutrients the body is better able to kill the cancer itself.

Lastly, watch 'Cancer: The Forbidden Cures' on youtube. It's an eye opener that everybody should watch. The huge pharmaceutical companies and vested interests really do suppress knowledge of many simple medicines that they cannot patent so they can sell their very expensive poisons which don't often work in the medium/long term.

Good luck to your mate. Pancreas cancer is often fast so no time to waste.

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Nothing much I can add except my sympathy.  My mum died of pancreatic cancer at the weekend only two weeks after diagnosis.  She was in her eighties so not as tragic as someone in their forties but a shock.  Having done some research there is sadly little chance in most cases.

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