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


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Mmm, Interesting Conversations -


I once got stuck in a lift with somebody who did their own house conveyancing. We were only stuck for ten minutes, but it felt like three weeks. . . . . .


(And when we got rescued by the Fire Brigade, it wasn't a couple of chunky guys from Blue Watch, it was a dear old thing of about 95 who couldn't have carried a rolled up newspaper, let alone me.)


Mo

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Brace yourselves; this is a long post....


I don't know where to start since my last post. Things are great (well for someone fighting PC) and things are also getting very complicated and we are encountering barriers that just should not exist. Really…. as if it isn't enough that we are dealing with Pancreatic Cancer. I have said before, how do people cope with this crap if you want to fight and you don't have a dogmatic, obsessive and stubborn person like me writing letters and pushing preconceived barriers. Right now I am happy and I am frustrated.


I am happy because my dad (touch wood) is thriving. Life is good and that blasted bedroom is nearly finished. For those that are facebook friends with me I will post pictures with bells and whistles when it is finished. I expect a loud round of applause.


Dad's trial has finished... whether he was getting the trial drug or not it is no more. The trial though is still treating him and he will carry on with Abraxane + Gemcitabine for as long as he will tolerate it and as long as it works for him.


A few things have geared me up for wanting to revive this thread. One is that dad has been very very fortunate with the main man on the trial. He is leaving in January because he has been head hunted by one of the large pharmaceutical companies in America. He is an amazing man and an asset that has stood my dad so well. What is interesting for everyone else is that he told my dad last week that they are seeing 10% of patients at stage IV make it to 5 years now. What is interesting for us is that he told my dad that if he had to bet his house on any of the patients making it to 5 years it would be dad. Obviously the odds are not in our favour (we are grounded in this) but it was bloody nice to hear that. However, I know how quickly this beast can turn but I would rather ride that wave of hope (and my family) and have a great Christmas and new year believing it won't be our last.


He said this is because dad has tolerated the treatment so well and beyond their expectations. For those new to this, read my whole thread (warts and all because I have been a pratt at times in all the emotions but resist deleting some of it because I think that rawness and being a cancer virgin is important to show). We have been to hell and back and dad did not tolerate the treatment, we persevered and we researched and we requested and we fought. Mostly, the PCUK nurses came through for us with their unbelievable solutions that your GP would not even think of in a month of Sundays. My dad hit rock bottom and now he has a great quality of life. I think beyond this I truly believe (nothing scientific - just my experience and the fact I have had neuropathy) the strong B vitamins that dad is on is the reason he has gone beyond expectations (link earlier in the thread). I have said before I have suffered neuropathy for many years and even before I saw research on cancer and B vitamins I put dad on it – 7000% for B12 (which is hard to overdose on – please watch though – B6 etc you can and so you need to research).


All of my threads are a bit mad scientist at times – you need to do your own due diligence.


So, we are working that dad will be in the 10% (such a crap figure should not make me smile but it is better than 3%) and this (and the conversation with head man) has really buoyed him up. We are all in a positive mindset…. scan is only 3 weeks away though so I hope I am not like last time and can keep positive.


The trial doctors are gutted that onivyde may not be approved by NICE – the head man swore when dad told him and dad has never heard him swear. They all have the consultation link and I am suitably assured they will respond. I am going to start a petition and when I do I will post here. It can only work with enough signatures and for that I need your investment in helping to spread the word. I have written the petition but I thought I may run it by a few PC friends and PCUK before I launch it. Things in the PC world have to change and change only happens when it is championed.


So, onto the big issues we are facing. It is around the NHS / Private treatment scenario. I sort of get what the NHS are saying but at the same time I don’t. It doesn’t matter to us what they say, what matters is that dad is treated. I said on my last post that writing letters really helps because at least if they say no they have to really think about it. Well they did really think about it and the result was a sort of no but not. The fact we had a poor meeting last time resulted in a meeting between the actual oncologist that would treat dad and the clinic manager (not my doing but theirs – more accountable on letter writing!). I am not sure what to make of the meeting so I will summarise by bullet:


 If dad bridges the gap between trial ending and NHS treatment by getting Folfirinox privately then the NHS will not be able to continue the treatment. Once dad is in the private oncology they cannot take it over (bear with me, this was a Thursday apt last week – I am not rolling over on that)

 The trial will not put in a PICC line because it is outside of the trial and NHS won’t do it because he is under the trail doctors.


 They are unsure of the above because no one has ever broached the subject (I am so surprised at this)


So, my responses tonight is this (you must be really interested if you have got this far!)… I have e-mailed NHS clinic manager and the trial doctor. Introduced them both in a very pleasant way and asked them to sort out who is going to do the PICC line. We have enough to deal with, let them sort out the rest. How can something so small (but big to my dad) get lost in all of this. Sometimes they seem to lose sight of the person sat right in front of them. Just put a bloody PICC line in someone (this is distressing my dad now)


Then this whole crap that they cannot take over private chemo seems a nonsense. It was based on the fact that the oncologist needs to be in with it at the start. Well what if my dad had just moved from another area on the NHS? Is the new oncologist going to say ‘sorry but you started your treatment at another hospital’????


My dads NHS oncologist I think is not open to constructive dialogue (I am never rude but my dad really has taken a dislike to him). I think the whole scenario was summed up by the clinic manager at the end… we have never had this situation before. She was lovely and trying to help us in that she was saying don’t go private and we will try and help you around nano. Mr oncologist was more negative. I know the dilemma he is in… my sister is a head teacher and hates those that teach at private school. The dilemma is this… I want to fast track dad from trial to chemo (Folfirinox) whilst getting nanoknife. Mr oncologist has lots of patients needing urgent chemo so we should wait our turn. He is absolutely right. We should wait 4 – 6 weeks. Well we decide no, but then us trying to bridge the gap means no NHS treatment. Why does it all have to be mutually exclusive? I do get what the oncologist is saying in that one person should be in charge of the treatment. Otherwise the lines are blurred and the NHS is right on that. But that helps us in no way whatsoever right now.


Plan plan plan ahead. The other little nugget we obtained is that the NHS would not be able to do anything for him until they have all his scans and records (fair enough!) and they have none of his info. Well they could have mentioned this before, if we had not been to these meetings we would be, when dads cancer progresses, in a terrible state trying to get this together for the next treatment plan. One of our saving graces has been that I plan ahead and it works.


We are told constantly, go on a trial, help the cause, help yourself and what is the reward. That the NHS can abdicate from all responsibility for your wellbeing unless an emergency. Well, not on my watch and I have been reading the legislation on this now. My poor dad is dismayed over this… everything the oncologist says in his eyes is ‘if there is a known benefit to the NHS’.

.

I will update this though. Letters already in the post and I will start legal proceedings on this. I have read the legislation and they are right… they have not encountered this before.


I said to my mum an hour ago, there is something wrong with me that I obsess so much over things. Why has this not been dealt with before, I feel like I am crazy. She agreed I am obsessive but said it works on so many fronts but sometimes I feel like I am going mad.


Now for a controversial comment. Is it me or do the only people I see past 2 years have private treatment of some sorts. Even outside of this forum. That would be a good stat for PCUK to get hold of. NHS v Private v trial. My obsession takes hold… I wonder if I could get the info myself. x

Edited by Dandygal76
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Goodness DG, meaty stuff and yes, I read it all. I would start with the stated premis that NHS and private are not mutually exclusive. My husband switched in and out with his heart treatment and his dental surgery. The GP and doctors did not always like it, lots of paperwork, but it can be done provided the rules are followed. My experience in all walks of life including legal and medical is that practitioners do not always know or comprehend the rules and interpretation can vary wildly.


As to Mr Oncologist, that is a fairly simple matter, you can ask for a second opinion or to be seen by someone else. You do not have to be treated by a doctor that you do not like or have confidence in. I am told this is not unusual. In our case I once demanded to be seen at a different hospital and this was achieved.


I think introducing the two factions and playing the patient welfare card was perfect and may well prove to be a master stroke


The statistical point you raise is interesting. There is evidence to suggest that poorer people do less well with most types of cancer and are less likely to have access to private treatment but there are other more significant factors. People from lower income groups have higher numbers of smokers and poorer nutrition which are both linked to higher incidents of terminal cancers. I will have to look for some more studies. .


Lastly, I am over the moon that your Dad is doing so well. He has his otherwise good health and the will to live on his side as well as a formidable family support team. I don't know if the letters help or hinder only that something is working so don't stop now. courage and perseverance DG.


Much love and thanks for a very interesting post. M xx

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Thanks Marmalade... your info over the private treatment is reassuring. I will bottom this out and report back. Anyway, as if my post was not long enough I forgot to mention...


- we are going back to see professor on 22nd Dec (just after dads next scan). Mr NHS oncologist has agreed to discuss the treatment options with him. I did Mr NHS Oncologist an injustice not mentioning that because lots of people have trouble getting chemo on the NHS around the Nanoknife because of fear of the unknown but Mr NHS oncologist seemed like he might engage. The reason I want to go back and see Prof is because the consultation has been the best one we have ever had and it is time to touch base again. For £400 it was a very positive meeting and he is the only person to have ever pulled the scans up and take us through what we are up against in minute detail. I have asked my sister to come because previously we all walked away feeling really informed and with positive choices. You cannot put a price on that.


- The trial doctor is still very keen we get genomic testing done. I had agreed with Prof to get this done at the same time as nanoknife (to save costs) but I think we will push ahead with beforehand in case they miss the sample and then Nano will be our second chance. Dad's view is if they don't get it on either times then the chances are the third time will be the same. Up to 5% of PC cases can be genetically inherited and I have read that there are different outcomes and treatments for this (positive ones). I am yet to delve further into this but why the hell is everyone not tested (America is not ahead on the whole but some medical centres do this as a matter of routine). I think the reason I am so interested in this is because there is an inherent factor in our family. My dad is one 5 children. 3 of his brothers all got late onset diabetes (plus dad) and other issues surrounding the pancreas. It is a factor not to be ignored.


For anyone thinking of genomic testing - we are suitably informed to do this once the cancer starts to grow again. We are informed not to do this whilst in treatment. I would have pressed ahead with this but the institute said no.... just that knowledge is power thing I like to put out there. I think some people make too much money from these things, shop about a bit and get some opinions. At least the advice we received around this had no financial interest in my dads welfare.


The other thing though is why do the NHS not do this. My American friends who have had this done are told which chemo will help. One was told not to bother with Abraxane because it is unlikely to make a difference. The NHS whittle on about resources but how about better diagnostics and targeted treatment. It supports the treatment v no treatment debate. I read what Ruth said (sorry to quote you Ruth!) regarding she would not take more treatment if the oncologist said she would feel awful and it would only extend life by a couple of months. But who is to say only a matter of months. It is these blasted median stats which for some lucky ones translate to years. I think profiling the tumour if you can afford to is the way forwards.. you may get nothing from it so be warned but on the other hand, it is emerging as a way forwards. All of the trial dr's is stating this as well (so it is not just my opinion).


I have said that Mr trial dr has been head hunted. He is going to be a director of a very large and influential pharmaceutical company. He is going to give us his e-mail address (you will be surprised I have only ever messaged him 4 times so he does not worry to do this! - I take my frustrations out on here I am afraid). He said he will e-mail us with any interesting things dad should try.


I really hope we make that 5 years. My son is about to turn 17 and being in his twenties and more independent we would be grateful for. Dad would be grateful for mostly. x

Edited by Dandygal76
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Hey DG, so pleased to hear that your Dad is doing great but sorry to hear about your NHS frustrations...join the club :(


I did a little Google this a.m having read your post last night, and found this (though you've probably seen it already):


NHS Choices website


"If I pay for private treatment, how will my NHS care be affected?"


"Receiving private and NHS care at the same time

If you're receiving private and NHS care for the same condition, your NHS and private treatment can be supervised by one healthcare team.

You cannot choose to mix different parts of the same treatment between NHS and private care. For example, you cannot have a cataract operation on the NHS and pay privately for special lens implants that are normally only available as part of private care.

Instead, you either have to have both the operation on the NHS and standard NHS lens implants, or pay for both the operation and implants privately."


http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96

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I have read this previously W&M but the situation is not as simplistic as a cataract operation. I am also not sure the legislation supports what they are saying when you delve deeper. This is not wanting to get private better treatment on the NHS, this is them providing continuing care after private treatment. They are careful with their wording and I do not think they are on a sound footing with my dad.


regarding the PICC line... we will see how it pans out. Someone will put the PICC line in and I will get a resolution to this simple matter.. let us see how they talk to each other. x

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W&M I just re read your post... Why are we in your club? I hope everything is okay. I would advise to challenge the NHS. Sometimes they get into a rut of historic working that is not always backed up by legislation. Their policies are based upon the knowledge of the person who wrote the policy. This is not always a correct interpretation. This whole theme will be an interesting development but please, don't take the word of some bureaucrat with a policy in their hand. I have before gone against my own organisations solicitors advice (over DPA and with them knowing I was doing it) - the result was the ICO agreed with me. I am not saying i am infallible - but neither are they. x

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Oh don't worry about me, everything is really good with hubby. My NHS frustration is mainly over Abraxane and the fact that it's still not available on NHS England. It's not appropriate for hubby at the moment and if he does need it we'll fund it privately but the vast majority of PC patients can't afford to do this, which is very upsetting and concerning.

Xx

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The abraxane situation is awful. My dad has responded really well to it which could mean Folfirinox will do nothing. I have seen very few respond to both so we could have been screwed without it (I still hope folfirnox will work though). Don't pay for the treatment, buy a flat in Wales! If you can afford the treatment you can afford the flat. That way you keep your money in your pocket and keep the thousands and thousands you have paid to be treated via NI contributions. x

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Hello DG


I too read through all your posts! As you probably know, I am not that "up" on the latest treatments but in reference to a couple of points your have raised is:-


1) Apart from drugs which are not accessible on the NHS and shorter wait times, I don't believe private treatment is all that it's cracked up to be. The more I read other peoples stories, the more I see how lazy hubby's oncologist was. We put our trust in the oncologist -after all, he was the expert, wasn't he? Then why wasn't a biopsy taken either before or shortly after chemo began - not a year later when the disease had become far more aggressive? Why was he given a chemo break of 3 months when his CA19.9 and CEA markers was increasing. We questionned it at the time but was told oh, its okay. And we didn't really know any better. I never thought to question a biopsy, it's only now that I've come to realise it should be standard practise to determine what type of tumour he was dealing with. As for the rising tumour markers.....well that speaks for itself even to a layperson surely? The point I try to make here is, the grass is not always greener on the other side. Our Mr Oncologist was receiving a weekly fee from the medical insurers to "treat" hubby, so he still got the same amount of money by either doing bare minimum or maximum. Slightly different if you are paying privately I suppose but we had sufficient cover to ensure that there should be no limitations. We even had authority to try Onyvide (spelling?) but of course, talk about shutting the stable door after the horse has bolted. I'm actually getting myself quite worked up now typing all of this because with DG's approach, I am 99.9% sure hubby would have lasted that little bit longer. However, my brain tells me to let it drop because I can't turn back the clock but I do hope that our experiences can help others going forward. Moral of this story is get a 2nd opinion if in ANY doubt. I so wish he had of. I did suggest it a couple of times before getting my head bitten off - hubby had his own views but please, trust your instincts.


2) After a much longer 1) than planned, the other point I want to make is, no-one with PC I believe, should be left 4-6 weeks without treatment, when treatment is needed. ITS ASKING FOR DISEASE PROGRESSION. And DG, you've probably realised that 4-6 weeks would probably turn into 6-8 weeks + because they won't have had your dad's records or some other inane reason.


Rant over, love to you all xxx

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PW - you shouldn't over think this. You hubby beat the odds and did very well. There is not much more you can do than beat the odds. The chances are it was just his time and there was nothing else to be done. We are yet to see how far my dad gets and so it is comparing apples and pears. Even if dad gets further it is still apples and pears because of the uniqueness of the illness with each individual - for all we know dad may have got this far on his own.


When this beast turns and decides to stick two fingers up I don't think there is much more to be done. It is their decision as well to be stubborn - you cannot force them into treatment or second opinions. I am in the dog house right now with dad for sending that e-mail yesterday asking for someone to put the PICC line in and make a decision (he doesn't care about the NHS but likes the main man on the trial) - it is a difficult balance in all of this and our patients do not make it easy at times. x

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A quick stop by with a hooray... NHS are putting in a PICC line. The trial are going to maintain it. Looks like they can work together. The NHS cancer clinic head who is also a qualified nurse may prove to be a beacon of reason in all of this. I do hope so. X

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  • 4 weeks later...

I am not sure who is out there following our story anymore but we have hit some rocky times that I hope we can steer through to clearer waters. Dad had a CT scan the week before last and the results were confusing. The trial stated...


'The liver metastasis in segment 2 is barely visible. However there is a new focal dilatation of the left lobe intrahepatic bile ducts which is of uncertain clinical significance. The liver is otherwise normal.'


The trial said well done and dad should continue for another 2 months. Well it might just be me but if something is of ‘uncertain clinical significance’ we don't sit around and wait for two months to find out if it is actually clinically significant. So off to London we went to visit the queen (well it rhymes so hopefully you get who I mean!). Prof (rhymes with Queen for newbies but feel free to ask PCUK) took a look at the scans for us. You may not be aware of this but Prof is also a Professor of Radiology at a large London hospital so he knows his stuff around these scans. Well Prof stated...


‘The dilatation of the left biliary tree is new and unusual… Ted needs and MRCP and CT PET’


It is always a joy to have two conflicting pieces of advice.


CA19 has also doubled from 300 to 600 although the trial poo poo this and do not monitor it I am changing my mind as to this and that it could be significant. PCUK nurses have said that if dad has infection in this area of the liver then that can affect them but this was a month gap between readings and I am certain there is no infection going on. I know CA19 markers can be wrong but this did trend up rapidly with dad diagnosis to 21000 by the time treatment started. PCUK nurses erred on the side of Prof in terms of this all needs further investigation. They were not saying anyone is wrong but just it wouldn’t hurt to look if we have the means.


Anyway I put it out in the interweb as well to ask how many people have been on Abraxane with it still working and now 10 months in and zilch come back with it working this long. We have been told separately that the tumours tend to stick 2 fingers up at Abraxane around 7 months (2 separate medical professionals I should add) so, to cut a long story short.. dad is about to jump ship. MRCP scan I have now been told will be results today. PET scan is booked for 5th Jan as you have to have 2 weeks off chemo for it to give correct reasons.


Regardless of scan results I am certain dad is going to change treatment.. dad is really fed up now with the Abraxane. This has coincided with them upping his dose 4 weeks ago due to weight gain which has caused increased side effects (slightly), he is fed up of going to London and in his head he just wants to zap the blasted thing because that makes sense to him.


I strongly suspect this new issue in the biliary tree is the result of a new liver met as well. As you know I have been preparing for this moment and I have established a timeline for this. We will get the disk of the PET scan same day (I already have the MRCP one), all records now to the NHS on the 6th. I asked for an appointment week commencing 9th as their continuity of care from trial to NHS has already been agreed in writing to ensure dad can get chemo around the ablations and nanoknife. Ablation was supposed to be the following week. However, I have reflected on this and discussed it with dad and I think it will be more realistic to move everything a week so that a) dad can have a longer break to regroup and b) NHS can get scans uploaded and review his info properly. I e-mailed the cancer clinic lead and head nurse who has already checked the pharmacy will have the Folfirinox in and this has been confirmed. We are set up to go but it is just about pushing the button now and that in all honesty is ultimately down to dad.


These are scary times. Firstly I know how quickly things can turn and we cannot afford his performance status to drop so the NHS can refuse furry fox and I am also very conscious that it is infection that can pose the biggest risk around this time. We really need to get the ablation done before we start getting into stent requirements and the complications that can cause. The final issue is he may not respond to Furry Fox at all.


We also be looking to, if the new change is a tumour, get that new tumour biopsied for genomic profiling. If we do this at the same time as nano / ablation whilst he is out asleep and the equipment is there then it will be cheaper. The risk being around this that if they miss and do not get the biopsy then we will not have the chance to get that original sample until new growth again.


So, fingers crossed this blasted thing does not move too quickly and before we can implement the next plan and all toes crossed that the plan succeeds in giving dad the now 21 months to see my boy off to uni. It is still a long shot but I see a fair few making it that long now but it is the luck of the pancreatic tumour draw as well I am afraid and sometimes none of this stuff will work against it.


In the meantime, we had a nice Christmas overall and looking forward to bowling on New Years Eve. It is also quite surprising, given the circumstances, how we are all looking forward to dad enjoying this small break. X

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Wow Dandygal. You are most certainly incredibly organised, determined and well researched. You seem to have absolutely everything covered. Good plan.

I hope the uncertain biliary tree finding comes back as nothing to worry about. It sounds like the existing liver mets have responded to Abraxane very well and to have these as vaguely detectable is great news. Is it these lesions which your father is having ablated? If so the ablations should get rid completely I would have thought. Is nano knife for the primary Pancreatic tumour? You will find the hospital incrediblely efficient I am sure. It's such a quick non invasive procedure.

Let's hope your father has a positive outcome from Folfirinox. There are so many stories of success with this chemo although it isn't pleasant. It does seem to me that CA-19's are a good indicator of disease activity.


Good luck with everything xx

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DG, although I don't post much myself I read everyone's posts and chip in where I feel I have something useful to say.


I agree with Ruth that you seem to have everything covered and that you are doing an amazing job as a champion for your Dad's treatment plan. Actually, you're not just championing it, you're leading on it. And you're able to do this because of all your research and networking. Not many people would have the know-how and resourcefulness to do this and it's so impressive.


I'm really sorry that something suspicious has turned up on your Dad's latest scan and I do hope that it proves to be nothing. I would also be concerned by the doubling in CA19-9. The UK medics seem to place little value on these readings but in the USA they seem to watch them far more closely. I wonder if part of the reason for dismissing CA19-9 rises over here is that there's an ingrained attitude that once it's on the rise there's very little that can be done to reverse things. I think that whilst this is true for some patients it's not true for all. And the sooner a rise is identified surely the more treatable it is? We were told by an oncologist that in my hubby's case any reading between normal and 100 is fine.


DG, I am keeping, and will continue to keep, everything crossed that your Dad continues to do well for a very long time to come.


W&M xx

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Hi DG,


Glad you had a decent Christmas and that you have the bowling to look forward to. You are now an old hand at this PC lark but little things can easily knock confidence so I hope you are hanging on to the roller coaster roll bars until you have some confirmation of what is going on with your Dad. You are doing the very best job for him and reacting to his wishes, what more could we ask of a daughter AND, you are spinning plates successfully with the medics, you are a star!


Much love to you and all those you love,


M xx

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Hi All,


Thank you for your positive responses and W&M I agree re the CA19-9's in this country but dads did reduce from 19000 down to that 300. Professor has patients who are back in the normal range with treatment (combined with chemo so it could just be that).


Yes these things can really knock confidence and it is a horrible time (it is the unknown that is horrid) but we always knew this day would come and dad has definitely decided to jump ship even though we do not have the results yet (they were faxed to Mr Nano office but no one is in!). Dad did this exactly around the Christmas holidays last year... Grrrrr. Even though he was not officially diagnosed until January we had already seen the report via his GP but we had to wait for the hospital appt around Christmas hols. Regardless though, it won't make a difference as the timeline is now set and the appointments are being booked so I am trying to stay pragmatic.


It is true that well researched and well evidenced debate, alongside my letters, has allowed open dialogue and discussion around choices but also that the trial gave us time to have these debates with the NHS. If we were in the throws of the NHS immediately post diagnosis we would have gone along with anything really and then the debate would have been retrospective and more difficult. We were 'lucky' in that respect.


I think dad is probably making the right logical call to change treatments and even though it could backfire it is the only logical step. His performance status on his records from 16th December show his performance status as zero and with the CA19-9 rising it is a no brainer whilst they cannot argue re Folfirinox and treatments. If we waited until dad deteriorated we will be risking all future plans re treatment. But it is that unknown, if he starts to get ill before the next plan then I will kick myself that he does not get Folfirinox and nanoknife and if he stayed on the trial I would kick myself if the same thing happens later. Then... if the Folfirinox does not work on dad I will kick myself for that as well and that he should have stayed on the trial.


Hindsight regret really effects so many loved ones around this disease but there really is no right and wrong answer. The only logical choice was the trial and Abraxane regardless of where we go now, we could not have turned down that additional opportunity not available on the NHS. But if it back fires now it will be difficult to convince myself I know.


This may all be semantics and our plan will hopefully fall into place. We should be 3 weeks away now from liver ablation and then nano the week afterwards. Ruth - he did say he has a good chance of completely destroying the liver mets at the size they are. If there is a new met though and CA19-9 are rising then it means there is certainly still too much PC flowing around his system which is pants.


So anyway, here is to the new year and new hope. I hope very much I will back on here in 4 weeks time annoying you all with my letter writing for a 3rd line treatment (GemCap) for when and if the Furry Fox decides not to work or if dad does not tolerate it. In the meantime, I hope you all have a great new year and I wish you all the very best for 2017. As much as I hate dad got this illness I am very grateful for the dear friends I made around this in 2016. xxx

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Hi DG


Although I don't post as often, I still come on here to check up on you all. I couldn't leave this forum today without wishing everyone a happier, healthier and more peaceful new year. I can't wait to see the bad of this hideous year and pray that 2017 will be kinder to each and every one of us that has the misfortune to connect with this website. I will be home alone tonight and if I can be bothered to stay up, I shall stick 2 fingers up in the air at midnight.


Now, back to you my dearest DG. Firstly, you do not annoy us. But, I would like to draw your attention to a comment you made up above on this page which states "PW - you shouldn't over think this. You hubby beat the odds and did very well. There is not much more you can do than beat the odds. The chances are it was just his time and there was nothing else to be done." Please read what you said!!! You are not going to kick yourself at all.Instead, if push comes to shove, you should be asking yourself, did I do enough or was there anything more I could have done. The answers in your case are very very very very very very very clear. YES to the first and NO to the second. So you too should stop overthinking this, you have a great plan in place - MORE YOU CAN'T DO. Ok?!! At the end of the day, I am a firm believer in what's meant to be will be. You have devoted your life for the past year to PC and you have gone way beyond the call of duty. Your dad I'm sure is enormously proud of you so have confidence in what you've got planned and go with the flow because that's all you can do.


Take care my lovely and let us know how things go. I for one am following your story and as you know, willing your Dad on xxx

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Still no results! I will be kicking some arse tomorrow and so we will have them come what may.


I am crusading (when am I not)! I have e-mailed on various fronts and requested a 10 minute slot at the next PC parliamentary committee to give a 10 minute presentation from the patient and family stakeholders. Main thrust being delays in treatment at the start and the fact we have limited treatment options compared to other places. I want to point out that yes... median age of 72 at diagnoses, yes prob a crap outcome but... the younger and fitter patients exceed the expectations and are being let down. I want to explain to them the 2nd year statistic. I want them to look at the individual and not a blanket rejection with this disease that is so individual to all. I want them to realise the oncologist lottery on this (crap performance status - some only offer gem and others gemcap - why?). I will need your help... I will be providing a portfolio of evidence from patient / carer stakeholders and my presentation (if they agree) will involve quotes. More later or perhaps on FB.


I have also been really naughty... I do not know what comes over me at times. I am waiting on the NHS to confirm my dads appt w/c 9th and they have not come back to me to confirm (although they are engaging on everything else the oncologist is on leave until tomorrow). Being the skeptic I am I have prepared for any delay. Our oncologist works at a local private hospital and I have booked an appt the same week with them (I will forfeit the cost). So, if NHS give me a no I am not going to get cross. I will just embarrass all with a polite.. 'not to worry, I know you have limited resources and that is why I book in privately with him just in case'.


So, either way we will be seeing the NHS consultant the week commencing 9th to keep up with the plan. x

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You are a fantastic crusader Dandygal and PC world needs more people like you to stand up to the current state of play. I would be happy to help in anyway I can when you are preparing for your presentation and going to Parliament. Thankyou for doing this on behalf of us all xx

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Thank you for that kind offer but let us see first if I am given the permission for my democratic right to speak. I have offered up work references and was keeping it to a strict 10 minutes to increase my chances. I have so much more I want to say specific to dad, especially around the private / trial / nhs barriers and the need for them to consult and work together. They NHS / Charities etc say go on a trial, help the cause, help yourself and then I have seen the issues this can cause in getting anything out of the NHS and for the transfer of treatment. If people are not nuts like I am then you are left in that diagnoses waiting game again. Transfer of records, scans, referals, etc etc. It is a minefield. But, let me not dwell because for dad I have cut off any excuse for delay. This will not be for this presentation though - that is a more personal bag of mine that I will start with letter writing. If I am refused then I will lobby my local MP to do it on my behalf. We will be heard, one way or another. x

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Hey DG,

I really hope you're granted a slot at an APPG PC meeting. Although I'm sure that they're already well aware of all the issues that you mention, you'll speak with passion and from the heart, and that can only help the cause.

Good luck and let me know if there's anything I can do to help. I was planning to attend the next APPG meeting anyway so if they say 'yes' I look forward to meeting you in person and cheering you on.

W&M xx

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