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But here is the problem... I bet the trial next year excludes all with PC right now. Either previous Whipples, chemo or previous trial.


The trial dad is currently on excludes everything. No supplements (I get round that if they are natural and in food), no nanoknife and I have lined up for mistletoe therapy (but no on the trial).


Why can someone not just get a new drug and throw everything at it. Nanoknife, mistletoe, document whatever supplements you take, plus chemo and then add in a trial drug for good measure.


Someone has said in one thread that people seem to do better when they take a more holistic view of treatments. Well, why can no one trial a trial outside of the norm. It would be an interesting trial... throw everything at it and see the results. I think it would do better than most of the current trials.


And... if the trials ban all this stuff... it means they can make a difference.

Edited by Dandygal76
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Don't waste your energy on the Southampton drug. That page dates from 2013 and this is what CRUK said more recently about the treatment:


" conclusion Chi Lob 7/4 is a safe drug and it did activate the immune system but in this trial it did not improve the cancer of anyone who took part. The researchers think that in the future it should be tested in combination with chemotherapy or another type of monoclonal antibody."

Read more at http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-the-monoclonal-antibody-chi-lob-74-for-advanced-cancer#WbTQqJ4fQpMJKKij.99


I know, so much out there that's disappointing/confusing/frustrating/downright upsetting


xx

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I did not look at the date... I googled "pancreatic cancer news" on the filter of last 24 hours. I will double check next time - thank you. x

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HI DG

There is one comment above that I am concerned about. You say that PCUK have said on a thread that 'people seem to do better when they take control and do extra'. I don't think anyone ever said that because on what basis would they make that judgement. My husband was diagnosed early and was able to have a Whipple. He was judged to be clear of cancer after surgery but was put on adjuvant gemcitabine. As early as two months after surgery his blood levels were hinting at a return and a CT scan confirmed that. He then was given folfirinox which initially was said to be controlling the cancer but the day after he was told this he was hospitalised and died six weeks later. Because the cancer was diagnosed early we were very hopeful. Twice we did extra 'things' which was to pay for an initial CT scan when the NHS could not do one quickly and later for a colonoscopy required to confirm chemo could go ahead the following week. He pushed himself to recover quickly from the operation and followed all the medical advice. From diagnosis to death was exactly ten months. I thought that we were in control. We had to accept that he had a very aggressive form of cancer.

Catherine

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Hi Catherine,


I have changed the wording... I did not mean to insinuate that people are doing less than others in their tackling of PC.. I meant a holistic approach. However, regardless of holistic approaches it does depend on the mutation types and even in having PC some people will be 'luckier' than others with how it has mutated. I am very aware that this could turn on my dad at any point and that anything we try may just not be enough to help. He is also not the 'holistic' type so that is a challenge. I am sorry it took your husband so quickly, especially with the hope the Whipple must have brought you both. It is heartbreaking. Here is the wording from MSH thread for clarity....


Thanks Dandygal for your post of last week re statistics,


This is an interesting point, and certainly one that our team of nurses is well used to answering. From our perspective, statistics are numbers, and do not always reflect the amazing progress that patients (Mark being a classic example) make. During this process so many of you remain upbeat, inspirational and supportive of others - this in itself is a major achievement.


From the time that Jeni and I commenced working with the charity we have heard some amazing stories from patients who have defied all the odds, and this is a point we wish to highlight. Of course we do also appreciate this journey is not the same for everyone,and respect you in this conversation too. There have been some amazing advances in both treatments, and research into pancreatic cancer treatments and support is more advanced than 5-7 years ago. We do have quite a few queries about immunotherapy and if anyone wishes to be in contact with the support service we can certainly pass on some contact details to you.


We are also aware that there are other 'less scientific' factors that will improve patient outcomes, and this includes information about 'optimising' your condition - information about nutrition, use of pancreatic enzymes, support mechanisms in your local area, proper management of pain relief and symptoms and also holistic treatments such as massage and reflexology and access to support groups that all help on an individual basis.


As a group of nurses we so frequently feel humbled by those people who use our service and share their experiences, and we can certainly say that we have seen some very positive outcomes for many over the last 12-18 months.


This is also the amazing aspect of this forum that it is often the support and commraderie that you share amongst yourselves that is inspiring and uplifting and is so important to share.

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As I understand it the reason why 'everything will not be thrown at it' is because trials test one drug at a time or they add a new element to see if that gives better results than just using the single original drug. I can understand why, because they need solid results as to what is making the difference. Trouble is, if you listen to medical herbalists (my friend is one), they will tell you that some substances are very effective when combined with something else but have v little effect on their own. So in theory you could have 2 new drugs which would work very well if tested together but they won't be. More complex models are needed perhaps? But just as important I believe is knowing what you are testing ON. That is why I believe all trial participants should have their tumours profiled where possible. That may well show the a drug that might be discarded as not being very effective across the board, might be very successful on a certain type of tumour.

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Hi Didge,

I think the latest science into treatments shows that combined therapies tend to be more effective - eg Folfirinox, GemCap, GemAbrax. Lots of trials are already studying new combinations, which is good to see.

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Hey Catherine, I have been thinking about you all day and before I go to bed I just wanted to say that what you and your husband went through is awful. I know PC is aggressive but for it all to happen so quickly when not stage iv and with whipple must have been such a shock. There is nothing you could have done with it being that aggressive - I have not read a story like it (and you know I have read a lot of stories). I am so sorry for your loss. x

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I think the problem is that these single treatments are not working on the whole (although I know why they do them that way - and of course we want people going for the cure) but when you look at success stories online... it is those who have resource (money) and time (not worst aggressive) and access to different aspects of treatments that survive the longest on the whole. And I agree with Didge... combination drugs often seem more effective. I am saddened that people do not have access at stage iv to treatments both holistic and medical that could help them. Some American medical institutions are well ahead of us on this. There is international government funding for these trials... how about leaving the drug companies making there own way for their new drugs for profit and then using trials on the ground to see if current abstract treatments actually make a difference which we do see and to convince NICE to fund it. It would be possible within the EU funding to provide nanoknife and cyberknife and real life measurable opportunities to people fighting this thing.t. Combined with Forfirinox and then a blast of Abraxine and I just feel it would make more of a difference that any trial outcomes i have seen. Once the best outcome is found of what we suspect works then trial on that. For instance... why do all trials seem Abraxine based? It is now stuck in that regime because that is the established comparable... which seems mad to me when Forfirinox seems proven to trump Abraxine on the whole - nothing seems to move forwards with PC. It needs to also be remembered that 3% now survive stage iv PC past 5 years and this is without the full forfirinox results in those stats. I perceive that Nanoknife and different approaches are contributing to this and not new wonder drugs that are coming (not) to the front line... and all those people that have no access to this is awful. I have said a few times that prof nanoknife is publishing a paper v soon re nanoknife, including stage iv mets treatment but that has taken private patient data as there is no money in it. I am ranting now... I would love to set up a trial based on real people and their front line experience and the knowledge of PCUK. I really do believe we would trump the other trial results with a holistic approach. Obviously will not happen though. Rant over!

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DG, there does seem to be a lot of anecdotal evidence that nanoknife extends survival and improves quality of life and I agree it's awful that those without insurance or personal funds can't access this treatment. Hopefully when Prof NanoKnife publishes his data on PC it will be persuasive enough to convince the NHS to provide it. About a year ago, one of the London teaching hospitals was on the verge of offering it on the NHS but for some reason it didn't happen. This is incredibly frustrating.


There does seem to be a bias on this forum towards the better off, for whom private treatment is an option if the NHS can't deliver. I'm very aware that my husband and I are extremely fortunate in this respect, we are able to use the private route if necessary to speed things up (SO important with PC), and pursue other treatments. Inequality of treatment is sadly a major characteristic of PC in the UK.

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W&M - it is not just Nanoknife that seem to improve outcomes. It is the whole holistic approach.. the attention to detail in management of treatments, to look at the individual and a vast array of supplements that most stage iv survivors seem to take. Even the supplement regime is too expensive for some - it costs a fortune and when you are on a trial you cannot take most of it anyway.


If my dad cannot get to treatment on the trial... they will get a cab to your door and pay for you to be delivered there - £100 one way. Obviously this cannot happen on NHS - but some things can change. I have looked into my dads measurements re bloods etc and he would have not had chemo many times on the NHS rather than them fight to manage symptoms and keep him going on Chemo - not a critism of the doctors but the system.


Looking at the individual is important and top cancer places in the USA are starting to nail this and get good results. It is silly things that are getting me like when dad has had an infection and we race him to A&E because infection is a big fear. They are brilliant and dad is always treated in the 'golden hour'. Door to antibiotics should be one hour. Then he is sent home with a few broad range antibiotics on the Saturday for the week. Come Tuesday and the trial bins them and tell him to stop taking them because the cons outweigh the benefits.


The whole thing is just such a mish mash of different opinions that not even the sanest of people could cut their way through it all.


I do though really believe a trial could be created that does not cost billions but does actually make a real difference to those on the front line and to their loved ones. All this money is being chucked at trials without eliminating some of the obvious of what PC patients want and what we see is successful in a lot of PC patients. It needs one multi holistic and multi facet trial to set the bench mark and all new trial drugs use that as a baseline.


There is certainly a new trial baseline that should be set that is not just Gem + Abr + trial drug.


Good night to all. I am stepping away from the computer and research for a few days to try and restore my sanity but most importantly, remember that quality family time is what matters most. x

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