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


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I know they are probably aware of the issues, it matters though that they listen to the patient perspective. The raw reality of the cause. x

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  • Dandygal76

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I am going to go to the committee anyway and so we can all meet up for lunch if anyone going fancies it. It will be nice.


We still have no news on the scan... it is really difficult sometimes to push for these things and not be unreasonable. Prof L is away and if I had known he was going to be away I would have got the referral from our GP. That is a lesson learned for the future because there is always GP availability. If I have no luck tomorrow then I will ask Wellington Hospital to fax it to our GP surgery. I am sure they will not want to do this as they can be pedantic on these things but it is my dads data, they still do not always get that he owns his own data. I have the disk of the scan that they gave dad anyway and I have tried to play doctor and take a look but it is such a specialised area. When we was taken through dads last scan I was amazed to find out the cancer was this slight off colour to the rest shadow on the scan. It was like 'wha, that is it!!'... I expected some glowing bogey monster. So, my review of the scan today and my personal medical opinion has revealed dad doesn't have any liver or biliary tree anymore, it has now all been taken over by cancer except a light smudge that was probably because I need to clean my laptop screen. Mental note to not look at scans myself in future. They think they are protecting us by sending the report to the Dr but self analysis of these scans proves that not to be correct.


On to good news.. dad is now booked into have the ablation of the liver of 18th January and nanoknife on the 31st. He is very much looking forward to shoving 3000 volts of electricity through the bugger. If the new dilatation is a tumour then the Prof has said he will try and get a biopsy for Genomic profiling from the new growth. There are no guarantees this will be successful on something so small but we have to try. I am still (probably stupidly) clinging to the hope he may be that up to 5% genetic anomaly that has better treatment outcomes. I do not know why the NHS do not test this as routine. I have a little bit of hope because there have always been pancreas problems in our family. His 3 brothers all have late onset diabetes with no underlying cause.


Anyway.. you can tell from how often I am posting that I am bouncing off the walls waiting for some results (and the NHS appointment). I will update you when I know. PET scan is booked for Thursday as well.


Back to work tomorrow, that will help the waiting.


xxx

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We have results! I am such a thicko not to have thought about it. The reason we booked Wellington is because it is on the HCA system and so Prof L would have immediate access. But so did the trial... Dad went for bloods today and the dr said... oh you have had a new scan. I could have got the results over a week ago.


We have a new met - a small tumour and everything else is otherwise normal. Bye bye trial... second opinions all the way. x

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Hi DG.


Well I hope you can stop bouncing off the walls, it must be very painful! Just joking as I know how important it is to keep all the plates spinning and especially how important it is for you to know you have the bases covered. I also know that PW is bang on the money when she tells you that you couldn't possibly try harder or be a more dedicated daughter and carer.


I'm very interested in your endeavours to raise the patients banner with the Parliamentary Committee and would be happy to help if it is needed.


Good luck in all you do and remember we know all there is to know about what it feels like to be one human being holding back the tide and we love you for it.


M xxx

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Thanks Elaine and Marmalade (and everyone). Your ongoing support is, as ever, amazing and always welcome.


Well.. lot's of activity today. Dad went to the PET Scan and we had the results within 5 mins of him leaving the scan room (well I did!) and before they could have even started the scan assessment themselves. The results were more of a a crude once over by the Prof so we may hear more tomorrow because I think he would be focused on the liver and pancreas for the procedures. A bit of a turnaround though from the MRCP wait. As far as we have been told from the scan, the pancreatic tumour and none of the other liver mets are glowing 'hot'. Basically, they are not active and not absorbing any sugar so who knows if they are dead or just luring us into a false sense of security before they come back with a vengeance. There will be no way, if I have anything to do with it, that we will be waiting on 3 monthly scans and I am going to try and convince dad for inbetweeies at his cost or more realistically negotiated with the NHS they do 4 monthly and then we will do the other one to keep it 2 monthly otherwise we will pulling our hair out over scans all the time which is not healthy either. So, at the moment we have the one new liver met around the biliary tree that was def enjoying a chomp on the sugar or whatever solution they gave to dad. This is not suitable for ablation though because it will damage the bile duct and so it will be nanoknife for this area now which is a shame as I did have a preference for ablation of the liver. The pancreatic tumour though is still getting 3000 volts of electricity for good measure, even if it thinks it is convincing us not to bother by playing dead.


As for the NHS... they are trying (and I mean this in terms of both meanings of 'trying'). Even though I have given them everything short of the scrapings under dads finger nails the oncologist still is not satisfied. The Cancer Lead / Manager has now taken it on for me because I am just p**sing in the wind trying to satisfy them. So, we are still aiming for appointment next week (her words not mine) but now the clinicians are talking to each other (prof nano, trial, and NHS oncologist) so hooray for that!


In the meantime there has been an cancellation and dad goes to get the liver blasted now on Wed morning and the pancreas will follow suit on 24th.


It is amazing the psychology of this as well. Dad seemed really down, overly tired and not recovering as well as we thought he would during the chemo break. It was a worry it may be that the cancer was taken over but after all the positives today he seems in a much better place.


So, the plan is still on course and let us see if NHS deliver as they said. All of the above is a mute point and a waste of money if we still have pesky cancer flowing through his system to form new mets. GP is being harrassed tomorrow to see if he will do CA19 markers. I think we would rather not know right now in someways because there is nothing more we can do and it will cause stress however, we need to try and get some so we can benchmark the treatment effectiveness.


I was so glad dad did not light up like a pinball machine - sometimes you do not realise how worried you are about things until you feel the relief the other side.


DG xxx

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Great news about the PET scan results DG! I hope that a good knifing from the Prof will bring about even better results on the next one (and the one after that and so on).

And I'm definitely up for lunch after the APPG meeting. PW, if you're reading this, I hope you are too!

W&M xx

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That's what you call a rollercoaster ride DG. So pleased it's not any worse and that liver blasting has been brought forward.


Wife & mum. I am and you bet! Do we know where and when? Xx

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Okay... we have nanoknife tomorrow on the liver. It looks like it will a very small procedure on that one new met on the liver because we had the formal PET scan results and everything is 'dead' in terms of not taking up the tracer. Nothing is lighting up except this one small met and the report said that was small / moderate intake. So, that was some really positive news... especially re the pesky bone met he had from the start and was a bit of a dilemma. Prof L said he will have a good look again tomorrow on the CT scan during the procedure and zap anything else he thinks looks suspicious. I know these things can start lighting up again but who knows, perhaps the trial drug did do it for the old pre mutation cancer on the whole.


Prof L is also going to go for a biopsy of the new met so fingers crossed he can get some, given it is small. We have had a biopsy fail before at this hospital and I am more reassured it is Prof L because the last Dr tried looking for the mass in his stomach and dad even had to tell him is was in the pancreas! Nothing like good bit of preparation and no wonder he missed.


We got a CA19-9 marker blood test done at the GP and we are now up to 2000 (Dad's peak was around 20k pre trial) so that is a worry. We also have the NHS appt (Yey!)... as you know I was aiming for week commencing 9th and they have given us Wed 18th. I think on the whole that is a good result considering dad only formally left the trial last Wednesday - it is only 3 working days out after all. They are trying to delicately balance my advocating for dad against the fact the poor Dr Oncologist does need some time to look at the stuff and make a clinical decision himself. The poor man will probably be worried I will be haunting him for months but I am fairly certain once treatment starts my dad will kindly tell me to 'do one' until he needs me.... Thus saving the poor oncologist, himself and me from myself! Hahaha.


So, onwards we go. x

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Nano is done and all went to plan except dad is being quite sick... he thinks it is the anticipatory sickness because he took himself off the lorazapam (and everything else!) and because of where the treatment is being undertaken (Euston drop of used to be the worse place for this sickness with him). The power of the mind!


No biopsy though... Prof said it was too close to the bile duct and there would be too much leakage into his system. He was not comfortable performing it. There is no right and wrong answer around this because the cancer community are divided as to whether biopsy can cause further cancer spread or not. It is disappointing but I am pragmatic over it and I was sort of prepared. He is saying he will get a biopsy of the pancreas during next nano but I need to look into whether it would be worth doing this on the pre mutated cancer.


What we have learned is the NHS Oncologist and Prof L have been talking which is good. Prof says dad will be on chemo before the next nano (13 days) but is advising dad to think about this because the procedure will be cancelled if he is ill. So, it looks like an appointment will occur with NHS on Wed next week but chemo is being lined up swiftly after that. I know I have gone nuts over the NHS attitudes before and even though the transfer was difficult I think this Lead Cancer Clinic Nurse has been absolutely amazing and Mr Oncologist seems up to give it a go as well. I am hopeful and calm!


I think I am more disappointed with the trial protocols not dealing with this transfer. There really should be a set methodology of ensuring the NHS is fully informed throughout and sent up to date records (I had copies of everything but I was forewarned months ago by the Cancer Clinic Nurse this would be a blockage). They should have formally discharged dad to the NHS and kept them fully informed all the way. If I was alone and on chemo and feeling 'cancer brain' like dad this would have been so difficult. I found it difficult and it is what I do naturally.


Saying all the above, don't worry about dad at the moment. He was outside my house the day before yesterday with a bloody jackhammer trying to put electric in my garage so on one side of things he is feeling the cumulative effects of chemo but on the other he seems weirdly okay (he can only manage about an hour work a day though). If I had terminal cancer I really would not be worried about putting electric in someones garage though. xxx

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I have nothing but admiration for the way you journey through the maze of difficulties that keep getting thrown in your way. I am so glad the nano has been done and hope your Dad's sickness stops soon. Hoping he has a good day today. DG can you explain to me what anticipatory sickness is please I keep hearing that but don't fully understand it.

Thinking of your Dad and wishing him well

Elaine

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Hi Elaine. I am on my phone and I am not a fan of typing on it. Anticipatory sickness is when it is your mind making you sick rather than directly because of the toxicity of the chemo. So, with Dad at the start of it, he would have chemo and have nausea/sickness for for few days and then feel better as the chemo left his system. Then as the next chemo session approached he would start with sickness and nausea before he treatment. As he travelled to treatment it was increase with sickness at euston and in the trial clinic. It was not the chemo but his mind anticipating treatment. It got so bad it ended up whole time when he just thought about food as well. He could think himself sick... even on his week off. Lorazapam did rectify this for him and a probably some other things. I hope Peter does not have it? X

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The condition is like the Pavlov's Dogs experiment. Each time he fed the dogs he rang a bell. Eventually, every time he rang the bell the dogs salivated whether or not he fed them. I've got a feeling it's called a conditioned reflex but I might have made that up. It's 50 years since I did Biology O Level.


Just thought I would share that with you !


You're a legend DG. I wish I had a tenth of your determination and energy.


Love, Mo

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Dandygal76 wrote:

> 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


Thank you for your interest in the APPG on Pancreatic Cancer’s Early Diagnosis Inquiry. We want as many people as possible to share their experience and insight as part of this Inquiry. There is an inevitable limit on how many people can appear as witnesses – and these places have been filled – but the APPG will also be carefully studying all written evidence received. The deadline for the written submission is the 17th of February. For additional details about the inquiry and the required format for submission, please refer to the Terms of Reference on our website at http://www.pancanappg.org.uk/wp-content/uploads/2016/12/APPGPC-Early-Diagnosis-Inquiry-Terms-of-Reference.pdf We warmly encourage you and anyone-else with such relevant experience to the Inquiry to take part in this way. In addition to written submissions, the charity is keen to study your comments on this forum when preparing its evidence for the Inquiry, so please don’t hesitate to contribute your thoughts here: http://forum.pancreaticcancer.org.uk/viewtopic.php?f=8&t=1872. If you contribute your thoughts for the Inquiry on the Forum and you are happy for Pancreatic Cancer UK to feature your contribution in its publicly-available evidence, please state your consent in written form as part of your comment.

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I am sorry to come on here and say this when I want this to be a story of hope but my dad is very poorly. Headaches, nausea and vomiting. He was so looking forward to the chemo break but it has turned pants. I have to try and convince him to tell the oncologist on Wednesday.. PCUK state otherwise the sickness and furry fox on top would cause kidney problems. This is not made easy when they feel their choices will be restricted. I don't know where we are heading but I wanted to document it in the hope we have an upturn. If the story is to be told then there is no point missing out key parts. x

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Hi DG,


The one place you never have to apologise is here. As much as you would like to believe otherwise you can't make it all better for your Dad, you can help, and you continue to do that but whatever happens is not down to you or him or anyone who has done their best to help him deal with this. You are a good daughter and formidable supporter but you are human, we all know that, been there and got the tee shirt. We know what the fear is like.


Now that we have that out of the way, you must try and take some breaths, take advice from his consultant, GP or your local hospice about controlling the symptoms. The first priority is to get Dad feeling better. Then you can whirl around double checking everything, researching and jiffying everyone along if needs be.


Your Dad has done incredibly well and may well get over this hurdle, he has overcome worse, sadly he may not be able to do it to a preset timetable! Breathe, shake out the tension and review options when this is under control. Most of all, take your lead from Dad.


You always know where we are xxx

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There's every chance your Dad is just feeling a bit ropey and may well pick up...it's not unheard of. Like Marmalade has said, get him feeling better and then worry about the next step.


With you every step of the way and fingers and toes crossed for you.


Vx

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DG thinking of your Dad . I am praying that this is just another diversion on this long road they are all on. I now know why everyone says that we can only meet this head on one day at a time, it changes in an instant DG. If anyone can get him through this latest crisis it is you .



I would very much like to add my tuppence worth to the committee DG especially on the early diagnosis issue also the outdated and cruel 3 to 6 month prognosis that they seem to hand out to everyone. They extinguish all hope before the person even has the chance to let their diagnosis sink in or be able to research their type of cancer and their options. I know that it has been a battle to convince Pete otherwise because he was always of the opinion that Dr's know best.

If I am honest their prognosis halted me in my tracks until I found this forum and realised there is hope and life after diagnosis.

Sorry I'll step down off my soapbox now DG.



I will be thinking of your Dad and wishing him through this latest upset. Please keep us up to date on how he is .

Elaine

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TO ALL MY FELLOW PC WARRIORS AND IN PARTICULAR, THIS MESSAGE IS FOR ELAINE, MO AND STEPHUA AT DG'S REQUEST.


UNFORTUNATELY DG HAS BEEN BANNED FROM POSTING ON THIS FORUM FOR 3 WEEKS - I WON'T GET INTO THE REASONS WHY BUT I WOULD ASK THE MODERATORS TO RECONSIDER - THIS IS A PARTICULARLY HARD TIME FOR DG AND A TIME WHEN SHE MOST NEEDS OUR SUPPORT.


IF ANYONE WANTS CONTACT WITH DG OUTSIDE THIS FORUM THEN PLEASE COMMENT BELOW AND DG CAN DO THE REST.


IN THE MEANTIME, I WILL CONTINUE TO POST UPDATES ON HER DAD'S CONDITION WHEN SHE WANTS ME TO, FOR ANYONE THAT IS FOLLOWING HER STORY AND WILLING HER DAD ON AS I AM.


FINALLY DG HAS ASKED ME TO LET ELAINE, MO AND STEPHUA KNOW SHE IS THINKING OF YOU ALL.


LOTS OF LOVE

PW XX

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