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Thank you and our story... but we are not that far yet!


Dandygal76
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Good for you girl! You are such a power house for your Dad and yes, keep up the letters. It does actually help to drive change unlike sitting at home on your bum doing nothing. I am definitely going to send some letter myself :)

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I have managed to convince dad to try Gamma Linolenic Acid (which is always easier when I can state it is a suggestion from PCUK for a possible solution) and have opted for this bio available variety...


http://www.biocare.co.uk/default.aspx?GroupGuid=29&ProductGuid=328300&LanguageGuid=EN


However, I am really unsure what to do with the Vitamin E in the study provided by the PCUK nurses above. They gave the patients 400mg per day however, my research is showing this level may have an increased risk of death and also a Niacin (Vitamin B3) interaction which dad is also taking as a supplement. I am debating at the moment whether to reduce this to 200mg per day but I also want to copy the study to ensure it has the best potential to work. He currently takes 13mg in a multi vitamin.


Any thoughts?

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None whatsoever DG as it's all double dutch to me but just didn't want to ignore your post!!!!!


Totally agree with Marmalade that you are absolutely unstoppable where your dad is concerned, he must be so very very proud of you. Hope all's sorted now with the move, bet you are not going to do that again in a hurry!!


Much love and hugs xxx

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DG, whatever you do will be because you have been meticulous in your research! I am exhausted and in admiration of your dedication and I am sure your Dad is too!


M xx

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Ha ha ha. I opted for a 400mg in the end and was swayed by the research for this with PC on its own. I am always so nervous about changing the mix of things because I don't want to do anything that will cause a reversal of progress thus far. Did you all see that Pancreatic Cancer was on the front page of the Guardian yesterday for some breakthrough with an immunology drug. I was not overly impressed to be honest but being on the front page the headline grabbed me and filled me with false hope of that magic pill finally having been found.


Anyway, we went to the NHS consultant today and good news... dad will get folfirinox on the NHS when the trial finishes, subject to him being being fit enough to have it. Bad news, he has never heard of stage IV going on to have the whipple even if it has regressed. Very defeatest as far as I am concerned and so now I am writing to the multi disciplinary team at Oxford and to Germany to see if anyone else has the answer I actually want to hear.


Dad is on good form, he wanted to carry on decorating my son's room and put electrics etc in to solid concrete walls with his hammer drill thing. Well I sent him home because he nearly did not have 3rd week of chemo yesterday due to low blood counts and infection is the last thing we need.


I really don't know where this year is going, it has been a bit of a daze really and I really could do with time slowing down sometimes. It seems to have sped up when I want it stand still. x

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Marmalade, you are absolutely right. For some reason I had too much reflection going on yesterday and an underlying dread. We need to live for today and I should count my blessings that dad is both well and responding. I hope you are okay, I did send you a message on FB so you can contact me if you ever need a place to vent in private. x

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DG, so pleased to hear that your Dad is on good form and that he's eligible for Folfirinox after the trial.


I agree about that Guardian article, it seemed like a lot of fuss about not very much...a bit of over-hyping by the drug company maybe.


On the good news front, this last week or so there have been several mini research breakthroughs. That's after a couple of very arid months. Perhaps all the researchers have been on their hols. Bit by bit the research community are getting a better handle on the disease in all its many forms and complexities.


W&M xx

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Thanks PW. I kicked some arse last week and dad's scrape / biopsy will be with Sarah Cannon first thing Monday morning. When I say kicked arse I actually sent a very carefully worded cost warning letter if they did not resolve my complaint within 7 days. Just like sending my carefully worded letter to the oncologist about Furry Fox and leaving it a week before I sent it. There really are ways of wording these things. We need a new biopsy though for the next generation sequencing. W & M I believe did point that out to me, it can all be so confusing.


I actually had an interesting conversation with a statistician after something I think I read on here but cannot find. Put simplistically (as in the stats I am using are not totally correct) but if 84% of PC patients die in the 1st year then that will leave 16%. If from the 1st point of diagnoses 4% survive stage IV cancer for 5 years (which they do) then that means if we make January then dad has a 25% chance of making 5 years.


I am loving that thought. x

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I like that thought too DG. If we can make it to that 12 months lets hold onto the thought that there is a 25% chance of making it to 5 years. If you told me this time last year that I would be in this position and thinking that if I had 5 years left to live I would be horrified but now it would be amazing if that was the case.


Have you contacted Germany regarding possibility of resection? I am sure you have covered all bases as you are amazing at looking into all options for your father. He is very lucky to have you.


I am really interested in the fact that you are pursuing tumour profiling and what the outcomes of this will be. I know when I discussed it with my Oncologist it was indicated that as my disease has now possibly become stage IV it would not be worth having my tumour tested. I am not sure why and I will discuss this with him on Thursday at my review. I am also going to have a chat with him about the recent Guardian article on the Immunotherapy drug combined with gemcitabine and the positive outcomes this has shown. This was a small trial and the intention is to replicate it on a larger scale so I will be interested in when recruitment is due to commence. As it is only for people with metastatic disease I would hope I would fit the criteria. However knowing my luck at the moment there will probably be some reason that I won't be eligible.


Keep fighting and I hope your father tolerates the Folfirinox well.

Ruth x

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Hey Ruth. We are not in the Folfirinox territory yet as dad is still responding to the trial. I also messaged the trial doctors today about what sample we should profile and this was the response...


"We should try with this first, and if not enough tissue to do the test, then do another biopsy.

This is my idea, however we can discuss alternatives if this makes you feel more comfortable."


They are really up for doing the tests.. very keen and the trial institute is leading edge on this so I would really go for it.. perhaps call them? Second opinions all the way, I would never rely on one opinion. The NHS are truly defeatest to be honest, you have to push push push. I have seen someone online with a mutation that responded to breast cancer treatment. It is a 1% chance you have that but you have to take that punt surely? I am not sure if you are in the NHS but they are well behind on this. This is my last correspondence over the biopsy (with e-mails removed). M is the trial scientist. The trial are so lovely and so positive. I have both my kids in private medical care after this experience.


Edited by moderators.

Edited by Dandygal76
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It beggars belief… A paperweight in a sock may be a simple but effective solution… really DG it should be on a consumer programme. Persevere m'dear and address issues to the chef executive as they are the risk managers and the people paid to deal with issues like these. The clinical staff have no control over the administration at all.


Much love M xx

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I agree with contacting the chief exec. When my daughter was little she had a trigger thumb, but she also has congenital heart disease and was due some open heart surgery, so they wouldn't do anything with the thumb...I was pushed from pillar to post with her, appointments regularly cancelled and when we finally got to see someone, it wasn't the right person. She was in a lot of pain with it and I just thought she had enough to cope with having the dodgy heart. A quick e-mail to the chief exec and we were seen within a week, with thumb surgery sorted with a paediatric anaesthetist who specialised in heart conditions being brought in from Alder Hey.


Good luck with it all.


Vx

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Hi DG

New article on a US study at two hospitals of 23 Stage IV patients who underwent surgical resection of their primary tumour. Results quite encouraging...


Title

Primary Tumor Resection Following Favorable Response to Systemic Chemotherapy in Stage IV Pancreatic Adenocarcinoma with Synchronous Metastases: a Bi-institutional Analysis


http://link.springer.com/article/10.1007/s11605-016-3256-2


Conclusion

"Resection of the primary tumor in patients with metastatic pancreatic adenocarcinoma may be considered in highly selected patients with favorable imaging and CA 19-9 response following chemotherapy at high-volume centers providing multidisciplinary care."

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Thanks for that W&M. I have collected all the data in a neat little folder and sent it off to the multidisciplinary NHS team. If it pushes back enough we may try Germany again as well. We are now just starting the 4 week run in to the next scan. I prefer the 1st half of the 8 weeks!

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Well praise be to the NHS! After 59 days from the original request we finally have the tumour sample at the Insitute.


It was one normal courier on a same day delivery - there was not even any special requirements.


You couldn't make it up.


x

Edited by Dandygal76
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I've just come across NEGU in terms of social media chat. I believe it stands for NEVER EVER GIVE UP.


DG, you are living proof of that!!! Well done you. Shouldn't have happened but you got it sorted in the end xx

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Goodness me, 59 days and then it takes one day and such a simple process to get the sample to where it should be. Why did it have to take 59 days when it was that straight forward. Well done with your perseverance.

Ruth x

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It only happened because of you DG, what a star! Sometimes, when things are dark and you wonder if anything can ever be done to improve outcomes for this disease just look back at your posts. Every time you show someone that barriers can be broken down, decisions reversed, systems over ridden and processes bypassed, you make small steps forward for us all. Well done girl xx

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DG, if you're not busy next week, could you pop up here and sort out some 'holding' treatment for Peter ? And perhaps the week after that you could reorganise the NHS and stop the junior doctors going on strike ? And once you've done that, there's always Brexit to sort out. Superwoman or what !

Brilliant work. Good on yer. Water dripping on a stone and all that.

Much love, Mo


PS - I referred to you in one of my posts when I was using my stupid little tablet and the Google keyboard keeps on making things up and changing words all on its own. I typed DANDYGAL and Google changed it to Randy Girl. Good job I previewed my post before I hit submit . . . .

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