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


Dandygal76
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I am afraid PW and Sandra that we did not get to have the BBQ but dad is eating more now. He only started the fluroxetine a week ago and from everything I have read now regarding these there is nausea and all sorts of side effects for the first few weeks so who knows exactly what is affecting him now. Apparently you go down before you go up on these anti depressants. I am now therefore pinning my hopes that on day 28 he is going to jump off the sofa a new man, with a big grin on his face and dance the birdie song or something (I can hope can't I?). If not I will settle for him eating a whole fish pie for dinner and that will do :)


We increased his Lorazapam to 2mg a day to try and counter this anticipatory nausea but I think this may now be causing an increase in asthma so we are upping the preventor medication and lowering the lorazapam to 1.5mg a day. Whatever we seem to do there is a counter effect that then needs to be countered. I really hope we can get this medication right so that he can stay on the trial. It is the scan this time next week so we are heading into nervous times as well waiting for those results. We all know this beast can turn around and stick two fingers up at us whenever it chooses.


I did manage to call a few people about the concerns we have and we were offered some help from the hospice outreach which would have been great to have a nurse who knows what she is doing but.... nope he doesn't want it.


Oh well.... Onwards we go as we are! x

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Dandy, You make me smile, the birdie song indeed, perhaps the fish pie is better to hope for.

You really are doing your very very best for your Dad, and I know he does appreciate it really, even though he is being stubborn, perhaps like Trevor he is not yet ready to accept what is happening and his way of dealing with it is that only really poorly people need that kind of help.

Fingers and toes crossed for those results next week, let us know as soon as you can, take care love sandrax xx

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Again, couldn't go without saying anything.


As you know, I am routing for your Dad DG, I hope and pray his scan results and not just good but great. I will keep everything crossed for you. As you said before on another thread, everyone is different and there's no reason why YOUR dad can't be the lucky one. Remember that my lovely xxx

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Hi Dandy,


Pleased your Dad is eating a little bit better now. Hope that makes him feel a little better, and a little more confident.


Your last paragraph, was the same with my Dad. I wanted him to have a macmillan nurse, just someone extra that would be there for him. But no, he didn't want it. He associated it with dying, and of course, he didn't want to die. When I finally did persuade him to, he got a very bad nurse, that asked him where he wanted to die, and wanted him to plan his funeral. She never went again. To be fair though, you do read on here that the majority of macmillan nurses are very good

I understand your Dad not wanting to. He is very young, and probably has the same mindset as my Dad has.


You are really great daughter, and your love for you Dad is truly wonderful. Keep fighting for him.



I wish you both so much hope and love.


Leila xx

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Hi Dandygirl,


Sounds like your Dad is an independent chap, a bit like my husband. So please he is eating a little better. people bang on about this being a roller coaster but it really is. You are doing all the right things but it is frustrating when the thing that helps with one symptom causes another. I know just how you feel. Hope the day has been a good one. Much love, M xx

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It is nice to report some niceties... we have had a lovely weekend. We took dad off the metformin again because he has always struggled with it and hey presto, he bounced back a new man over the last two days and now we regret not ditching it before. He has been on and off it now since pre Christmas. It is renowned for causing sickness and nausea etc for first few weeks and when I went on the forums and saw other people's stories on metformin it was clear that some do not overcome the side effects at all and have to come off of it and we have no time for that right now with dad starting chemo on Weds... we would never be able to tell what is what in term of side effects long term. Blood sugar around this is a nightmare and this is more so as he was type II late onset diabetic anyway.


One of dads brothers and his sister came up this morning and we finally had the BBQ this afternoon and dad is eating well. It was so nice to see him up and about, it was a relief. He ate so well. The increased Creon has also helped with other stomach issues so I am very much 'god bless creon' at the moment as well. I could hug the person who invented it.


We are not sure whether dad is just feeling better or if the anti depressants are kicking in now but he is mentally in a much better place. When the PCUK nurses mentioned anti depressants to me on this thread 2 other people independently said that it was godsend when their love ones went through cancer issues and that it really helped them tolerate the chemo. With dad not being one to do antidepressants though I had to sell it like if the chemo is killing everything else then why not the brain cells that create serotonin. He could cope with a practical explanation.


Leila and Marmalade my dad is extremely independent but a couple of weeks back he did hit a low where I think he would have accepted the help from the hospice and I missed that window because I did not realise it was available to him now. But, now it is lined up as a choice for him when he needs it and as i have said before, everything right now is about expanding choices.


So, onward with the fight and the new thing I am looking into is DNA profiling of the tumour which I mentioned to the trial doctors and they came back that it was 'a good idea'. Not often you hear such a positive response from the medical profession over my wayward suggestions and so this has geared me up a little. I have e-mailed the Institute of Cancer Research and a couple of other organisations I found via google to see if they can profile it for a cost but have had no response as yet and so I asked PCUK via e-mail about who I can approach to do this because it seems a bit of a minefield. This may not produce the answers we want but I am keen to do it before nanoknife to ensure we get the original profiling that has not been interfered with. This is two fold really, firstly the newer treatments over the next couple of years I think will emerge more in this field and if we are armed with the tumour profile then he will be ready for any trials or treatments that become available specific to his DNA profile but also I have read a couple of stories where profiling revealed mutations that responded to different treatments already... I think one was breast cancer treatment and the man is clear of pancreatic cancer now. This is on the fringe still in terms of treatments and so I am pragmatic but at the same time... I want to be front of the queue.


I am not sure re PCUK about whether I can have this debate on here (so please delete this paragraph if not allowed) but I am looking into whether to do cannabis oil when he is off the trial as well. There are some good reports online and this is another thing that has been mentioned to me. In my youth (cough cough) I understand this is great for increased appetite but the correspondence I have had as to it's effectiveness with side effects is enough to make me sit up and take notice. And like I said to dad.. at least it would make him not give a crap! Hahahaha! I know this is controversial and if this paragraph is not deleted I am expecting a robust 'not proven' response from PCUK but actually I am a firm believer in alternative medicine and I have helped my own neurological medical issues via alternative routes when doctors had no answers. I would love to update you on this but let's see if my paragraph stays first!


Scan on Tuesday, results on Wednesday my friends. Scary times. However, let's go for now with the fact I am refilled with optimism because dad had bounced back. One way or the other I will update you all. I often see people browsing that are not members and I want this to be a thread of hope to all so even if the scan is pants on Tues... never fear it just means another door has opened and off to nanoknife we go! x

Edited by Dandygal76
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In addition to my essay post above I keep wanting to share with you my song at the moment. I saw all the lovely poems on the memorial page and thought it inappropriate to post it there, but this is my mantra with dad at the moment....https://www.youtube.com/watch?v=AOBs8dU4Pb8

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Cheers for that DG, listened and got through half a box of tissues. I'm only joking, you know that's my way of coping. I'm so pleased you posted that link. Love it, Love it, Love it. I was not really into music before but now I am after having to chose the music for Wednesday.


We had some tough times as I'm sure everyone else has and every single time, hubby would say "one door closes, one door opens" and boy was he right! I got shivers reading your post, it will indeed mean another has opened and that will be the route for you to follow. Results Wednesday? Shivers again. They are going to be good. Hubby will be cheering you all on and sending you nothing but positive vibes.


Take care my lovely, you and your family will be in my prayers tonight xx

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PCUK Nurse Jeni

Hi Dandygal,


Thanks for the post regarding the use of cannabis oil.


We are aware that this is illegal in the UK, however, we are also aware of people having access to this, and obtaining it online etc....


Its very important to know where the product is coming from and that it is "pure" etc....(or whatever language is used for this type of product). And of course, we would advocate having an open discussion with the oncologist, as they may also have experience of this, and of course, may be aware of certain interactions with chemotherapy drugs, or in your dad's case, any trial medication he might be on.


As with any alternative cancer therapy, we would advise caution in replacing conventional cancer treatments with cannabinoid therapies. We would also encourage you to do your own research into therapies, in particular, finding research data and a good evidence base which supports the efficacy of this or any other alternative cancer therapy before undertaking such a regime. Well aware that you do a lot of research Dandygal, so this is all good.


It should be noted that, like any treatment, there can be side effects and that it does not come without risks. There may also be a high financial cost involved in accessing this treatment including the chance that in trying to obtain the medication you fall victim to a "scam" and end up with either poor quality preparations or none at all.


So, proceed with caution, as you do anyhow.


Kind regards,


Jeni.


Pancreatic Cancer Specialist Nurse,

Support Team.

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We would obviously never jeopardise the trial and so this is a next step after the trial ends. I am just gearing up now in case the scan this week is not in our favour.

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Thank you PW. I appreciate your strength to come on here and be here for me. I wish I could make it better for you but you have to keep treading this path and you will come out the other side. Everything your hubby was is in you both and his strength will shine through you both. I hope we do get good results this week... someone has to be the lucky one in those stats! x

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Well, we have the scan results and it is still showing improved shrinkage to the tumour from 5.2cm to 4cm however I find this hard to reconcile when Professor measures the tumour at around 2.5cm by 2cm at the outset. The scan is also showing the nodes on the whole are smaller. With regard to liver mets they have improved but are more defined which does not make sense to me. It is just some of the report seemed to contradict itself but 2 trial doctors independently were really happy with the results yesterday. I know I should be happy as well if they are but I feel nervous.


In addition to the above they have found 'a very slight ground glass appearance to both lungs... These findings are new and may be infective or inflammatory'. This includes one node that has increased in size but they are putting that down to infection also but have said it all needs watching closely. My dad has had escalating Asthma which got quite severe over the past few weeks but has now come back under control and so it could well have been inflammatory but is not nice to hear of anything new popping up on the scans.


However, the trial does not seem overly concerned with anything and dad is remaining on the trial so this is all good news in that sense.


I think you all know me a bit by now and can probably anticipate that I could not settle with a mixed bag of news and so I have forwarded the scan and the report to Professor for a second opinion and if he comes back saying otherwise the only option will be to send the scans again to the other infamous professor for a mediating opinion and consultation. Hopefully though the second opinion will be the same. Professor can ablate the lungs as well so it will not remove that option if things have progressed - it will just cost more money.


It just would seem a bit strange it is shrinking in some places and growing in others. They still cannot see the bone met but we need a PET scan for that as it is so small. He has also been put back on the steroids and so we may not get such severe side effects this time around.


So, limbo news at the moment and will update the thread when I have more news. Dad is happy though with everything and so that matters most. He needs the strength to put up with his neurotic daughter! Hahahaha!


xx

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Hi DG,


It does all sound positive but I know exactly what you mean about confusion and everyone not using the same scales and terminology. It does sometime feel that you have to become an expert on everything in order to protect your loved one or at least get them the best care. I am a bit obsessional and carry all the paperwork with me and demand copies of everything which saved my husband from having a very dangerous and inappropriate procedure at our local district hospital. The MDT notes said one thing and the GI consultant booked the wrong type of biopsy. This was compounded by the Consultant intervention radiologist saying to me "It is a dangerous and difficult procedure but if you want, I will have a go" I sense that you are someone who wants to know what is going on and I don't blame you a bit.


Anyway, it does sound like there is progress and that your Dad is feeling better, hooray for that!


Much love M xx

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Okay, great news. Prof agrees that the lungs are the tail end of infection and the node is nothing to worry about, he said the report is good - now I am happy and dad is even more happy than he was yesterday! I have agreed a retainer type arrangement with Professor for ongoing consultation and 2nd opinion of his scans and reports without an actual consultation and so that is also a nice thing to have in the background.


Marmalade it can be a nightmare but on the whole the consultants are doing their best but with PC the best is often not enough because there are so many variables and imminent risks. I think we just have to keep wading through and politely challenge and get second opinions where appropriate. Knowledge is definitely power in this ordeal.


We are just living between the scans and here is to another 7 weeks of shrinkage. Off to Tesco now to buy their sticky bbq chicken wings he has taken a fancy to! Whatever he wants to eat right now he gets! x

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Dandygal76

I seem to be the only one on here at the moment posting our story some distance I hope from that infamous divide. And in light of all the other stories of my friends I have found on here I find it difficult to post because I don't want to seem insensitive.


I just know that Steve and Mark's stories inspired me and I do see people are reading the thread and I want to write, even if it is a tiny thing that helps someone new to this beast.


Dad has turned a huge corner and his symptoms from gem / abx seem massively diminished. Saturday is normally his worst day but he has had a good weekend. He actually ate his first dinner last night for ages after chemo Weds. It has been the best weekend since the start of the whole chemo. There are many things that may have assisted with this:


- Firstly, the trial put him back on steroids but even when he was on steroids before he could not eat much.


- Secondly, those anti depressants have really kicked in and I think they have helped with the anticipatory sickness. There is no medical literature for this I can see but the change is just too coincidental.


- Thirdly, the large doses of creon I think means he is absorbing food now and it is not sitting in his stomach. Dad had bad tummies for the whole time and when we increased his creon this cleared up. Any increased nutrient absorbance has to self perpetuate into increased well being.


- Lastly, if he was on the trial drug and there is a break from that... could it have taken this long to get out of his system?


I don't know. Something we have done has made a marked improvement in his physical and mental well-being.


The main issue at this point is fatigue and weakness. He walked to get the papers this morning and his legs went from underneath him. They feel really heavy but I am pragmatic over this right now. We spent weeks with him not eating and then the trial says his protein has fallen really low. Combine that with too little creon to absorb the foods he eats and his muscles were bound to have suffered. I am open minded that this may self resolve now he is eating and taking more creon.


I hope I do not offend anyone still posting our update. I am very conscious of your suffering and send you my infinite love. x

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Proud Wife

Oh bless you DG. I don't think are NOT insensitive at all. I want and will your dad to be one of the lucky ones and there's nothing that makes me happier than reading your positive updates. I want your dad to do well and hubby would want that for him even more. When Dr Mark died, hubby cried for him. Although I was the one posting, he cared about everyone too.None of us want any other families lives torn apart by this wicked disease. We fight the battle with you and want you to win so never, ever, ever feel bad for writing something positive. It will give much needed hope to any newbies joining us here. Will post more tomorrow but in the meantime I am forever thinking about you and especially marmalade, Louis and Juditth16. Night all xxx

Edited by Proud Wife
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WifeampMum

Hi DG,


Really pleased to hear that your Dad has had a good weekend and I hope he goes from strength to strength.


When the doctors mentioned that your Dad is low on protein, did they suggest any particular food supplement? On the recommendation of one of the members of the 'Whipple Survivors' Fb Group, I've recently watched a video on nutrition for PC. It stresses the importance of sufficient protein intake for PC patients and says that whey powder is a good source. The video is here if you're interested:


Dr. Zhaoping Li discusses Nutritional Management

Agi Hirshberg Symposium on Pancreatic Cancer 2016




And for what it's worth, my take on happy/hopeful posts is that they represent another face of PC and should be celebrated here. But I know what you mean by not wanting to seem insensitive to your friends who are going through such heart-wrenching times.


W&M xx

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It's a brilliant post DG, it is always uplifting to hear that someone is doing better. None of us know when the breakthrough will come or how, people like your Dad are doing something very special for us all. For now it is wonderful to hear good news especially when the people on here have somehow become our extended family. Long may it continue M xx

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Dandygal76

Thank you all for you lovely support. I know how hard things are for you PW and Marmalade and I appreciate so much that you give up your time to help me. I hope Louis is having a good day today and PW... sending you more hugs.


W&M we have looked into all sorts of protein powders and we are adding scoops of milk powder with his cereal etc. My dad on the whole is natural protein eater and eggs, meat, fish and nuts are his preferred types of food so that is fortunately on our side. I will look at the video when I get home though and see if I can pick up some more tips.


Dad made it to the paper shop without falling today and so that is always a bonus!


Back to Chemo on Weds and so fingers crossed this good spell in side effects with continue.


xxx

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Proud Wife

How has chemo been this week DG? You have not been far from my mind as each day I will your Dad on. How is he feeling? I hope chemo has been kind so far. I have fingers and toes cross that the good spell will continue. I'm loving your hugs and sending many back right at you my friend!


Take care because I care

PW xx

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We are still in good times PW and all. My sister and nephew did their run yesterday for Pancreatic Cancer research and my dad came out to watch. Whilst he was sitting having tea he actually said he feels as good as before he got diagnosed, probably better because he has no pain. He still tires easily though and has muscle weakness but now he is eating you can see him getting stronger.


So, he had week 2 of chemo on Thursday and is coming round here in a bit for a bbq once the Grand Prix has finished. He is eating fairly normally but there are some initial indications of potential neuropathy which is a concern - slight numbness in one leg but it seems to have gone for now. I already have him on quite high doses of B vitamins to try and prevent this and am now introducing Acetyl L-Carnitine & Alpha Lipoic Acid Capsules to give some added protection. I am not sure if this will help but there is certainly no harm in taking them.


It is all a bit surreal really. I can't believe in 4 weeks we have gone from such an extreme in side effects to where we are now. The trial has said the NHS would have stopped chemo and he would have had many more breaks in treatment the way he was but it just goes to show, there is hope to those suffering side effects. I know some people will not overcome them and we are all different in our genetic make up but fighting for solutions, questioning everything and becoming proxy doctor with research and suggestions has got us a long long way down the line compared to having a blind faith in the establishment.


I know I am getting a little anti-establishment over many things at the moment but it is hard not to when dealing with bureaucracy around PC. The 'dead man walking' analogy on Patrigib's thread was spot on and we are going to fight the establishment the whole way if we have to. x

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Good for you DG,


I am shocked at the establishment issues we have come across. I know that lots of people get anti establishment because they have to be angry with someone but that is often used by the medical profession as a reason to allow shoddy practices and lazy doctoring "dead man walking" syndrome. I say all this as the mother of a doctor but I am not blind and deaf. You keep pushing on those doors DG, these are not patients to us they are our loved ones and we the she lions…


M xx

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Love that M - She Lions... Indeed we are!


My mum has asked me to post to say thank you to PCUK nurses. I fear that we may sometimes take your advice but we are so wrapped up in everything going on that feedback and thanks is not always as prompt as it should be. Well, apparently you asked for feedback re my dad's use of Scopoderm a few weeks ago and my mum did not deliver (neither is it on my list of things on this thread that we think helped dads side effects over past few weeks).


Scopoderm absolutely countered the excess of saliva and fluids and my dad says this also helped with the sickness because having it all down the back of his throat was making him feel sick. It is also a travel sickness drug I understand. If anyone reading this is trying to counter chemo side effects then this little patch would be top of my dads list right now.


Thank you again PCUK nurses. I do not know what we would have done without you.


x

Edited by Dandygal76
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