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

[Dandygal76]

Thank you so much for taking time out to deal with my precious ways. I am not in the thick of it as you are.. we are in a good place. I had no right to throw my rattle out of the pram. I again wanted to delete my comments... but I have not. It will not be my last emotional response. I think we are a relatively small circle of support. My responses are my responses... this whole thing is crap to be honest. x

[Guest]

Lovely to see you back Dandy. You haven't thrown your rattle out your pram! You are hurting. Your lovely Dad has been diagnosed with this dreadful illness, and you are hurting. Just like we all are.. You should not have been made to feel the way you have.

It might not have even been intended for you. I myself was incredibly sensitive when my Dad was ill, and I left for a while, but I know I needed to be here. Was sad really, the lovely lady that thought she has caused my leave, really had nothing to do with her, it was someone completely different.

You need to be here Dandy. You are fighting for your Dad's life. I know for certain, if I hadn't found this forum, my Dad would not have survived as long as he did, I truly believe that. I never had the confidence until I came here.

If someone, anyone, doesn't agree or like you what you write, we do not have to reply.

This forum is incredibly precious, so much more so for people like yourself who are sadly going through this. I have been there, I know how you desperately feel.

Leila xx

[Dandygal76]

Oh Leila... it really is a bitter pill at times and very unfair on a man who has really looked after himself. Saying that, it is of course unfair on anyone who gets it! Sometimes it just gets a bit overwhelming. My dad has always been such a strong man but he sorted out his fishing gear last week on his week off and did not make it yesterday now he is back on the chemo. He said he feels crap and he was better feeling crap at home. I replied that is great... keep the positive thinking up and his was reply is that he feels 'positively crap'. Ha ha! Not! I am so sorry you lost your dad, I can't bear to think about it but we are not in that place yet and we need to live for today. What really scares me is how people seem to turn so quickly when they start losing the battle. I am also beating myself up on when to tell my son the truth and there are 2 firm camps of opposite advice on that one. But, the thing is, although the NHS said it is terminal and 6 months I don't want to tell him that because we have opened up new doors. I want him to finish his GCSE's and have the summer we all had after exams - it was great wasn't it? I have read your thread and posts - I know you had a wobble as well, perhaps it is just part of the journey. Much love to you. x

[Dandygal76]

Sandra - I am not so sure about this bedroom stuff to be honest. Dad came round at the weekend, started to move a radiator, pulled all the floorboards up, created utter devastation and then hit a brick wall as chemo side effects kicked in. He ran out the door and left me in chaos and I had to move the bed over the missing floorboards. Not ideal and I am not impressed! Ha ha ha! But, my 16 year old is still nagging him - they have no idea do they. Bloody teenagers. x

[Dandygal76]

By the way - does anyone have any suggestions for this awful salty taste my dad is getting and is putting him off food. The trial gave him a mouth wash but then he just gets a medical taste that is also putting him off food. x

[PCUK Nurse Dianne]

Hi Dandygirl,

Thanks for your posts and 'sticking with things'. You mention the salty taste in Dad's mouth, I wonder if he has tried some of the herbal teas, ie lemon, ginger, or even lemon and ginger drinks. Ginger ale, or ginger beer especially as they can be quite 'cleansing' in the mouth and ginger is also good for nausea. If he finds they may be a bit overpowering due to the effervescence,just let the bottles go a little flat. Also boiled lollies can be very good for stimulating saliva and may help with the salty taste too.

I hope that helps and of course would be interested to hear if there is an improvement with this.

Dianne

Pancreatic Cancer Specialist Nurse.

Pancreatic Cancer UK support Team

[sandraW]

Hi Dandygirl,

Just reading your posts about telling your Son, you will be surprised at just how much they pick up, our grandson was 14/15 our granddaughters 9/10 and 6/7 and they obviously knew that granddad was poorly. Then we explained that granddad was not going to get better, but hopefully he would be around for a long time, but that he would not get better. Our grandson asked one of the teachers at school about PC and she said she would look into it for him. She then explained that the outcome usually was not good, he obviously didn't want to upset us by asking us about it. but did mention that he had asked at school, he didn't look into it himself though. As my husband deteriorated which happened quickly, they knew that granddad would not want to be ill, and the two older ones saw him for the last time 6/7 days before he died. Strangely enough our granddaughter was the one who wanted to see him in hospital, our grandson didn't, but even though I told him he didn't have to go in to see granddad, as his sister did I do think his hand was forced if you understand, but then he wanted to visit again the next day which he did. My husband was still "normal" at that stage although in pain and jaundiced, they then made the decision that they didn't want to see him again,

which was what we wanted, but let them make their own descion, the younger granddaughter was away on holiday, by the time they returned, we decided it was best not to take her to the hospital as it was a 4 hour journey from home.

I must admit our grandson (actually step grandson, as apart from my son, my husband was the first other stable man he had in his life) was totally devastated when his granddad did die, but he carried his coffin into the crematorium, at my husband's celebration of life, and both granddaughters stood up together hand in hand and spoke about their granddad and how much they loved him.

It's a year now since we lost my husband and they can now smile when they talk about him, which they do all the time and they all have a pendant which they wear everyday with granddad's photo etched onto it.

Of course what you decide to do is a totally personal matter, and I understand about his exams, we didn't have that problem, but I would be surprised if you son hadn't already picked up on how worried you are, and in a way started to put things together in his mind, what ever you decide its the right decision for you, take care sandrax xx

[Guest]

Hi Dandy,

My Dad was also given 6 months, and at first I was on countdown, I thought it would be to the day. But Dad was amazing and he fought so very hard for his life. I cannot imagine what the patient must go through in their mind, I guess we would never know. If your Dad trusts you and is happy for you to take over, then I would do just that. They have enough to think about without everything else. Dad's emotions were just the same, he would be feeling crap and just feel so very down, and then the next hour he would be feeling a little better.

With regardsto telling your son, I think Sandra's advice is very good. I don't have any children, but I think at your son's age, they would just take it in their stride, I think I would have done at his age if it was my grandparents.

Leila xx

[Proud Wife]

Ah I've found that post D76 and it was rattle not dummy. You didn't throw your rattle out either my lovely! The only thing precious about you is the fact that your are a precious daughter, wife, mother etc to your family.

I'm sorry to hear that your Dad's not feeling super. You'll know how I feel about carrying on with chemo now but to my line of thinking, there's a huge difference between first line and second line chemo and you just never know, if your Dad's not getting a placebo, the new drug may be just the miracle drug we are crave for. He's got to keep at it! I remember Ruth saying she would be her own statistic and I think that's absolutely right. I hope and pray the treatment will give your Dad some quality time and you can all say it was worth it. We can and you will, especially on the days he's not feeling so crappy.

Please don't let the news of anyone's decline dampen your dogged determination as everyone is different.

With regard to your son, forgive me if you've already said but what does your son know about his grandad's illness. Does he know he's having chemo? Does he know it's PC? If he does, I bet you he's googled everything.

Keep up the spirit xx

[Dandygal76]

Sorry PW, stayed off this post for a while. And, thank you so much Sandra nd leila for your response, your voices of reason have really helped me settle things in my mind. I have been sneaky... the moment I googled PC and saw the horrible crap that came up I was on the ball. I wanted to say it was bowel cancer (much better outcome) but dad would not have any of that and so we went with stomach cancer (50:50 chance). The 4 grandchildren would have googled stomach cancer. I know there are rights and wrongs of that but my son is now smack bang in the middle of his GCSE's. There is also some warped outcome of this in that my dad spent so much time on his education that my son wants to do him proud now.. he is studying more than most of them! I want him to have this summer.. that magical one after exams, plans for first holidays away, new girlfriend etc. I just don't want to tell him to be honest. I am not in the place of NHS saying is imminently terminal, I think we will prove them wrong. So how do I tell him what NHS said when to be honest i think they talk crap! Probably not on the whole but they were quite negligent in their approach for PC with dad. It is trained into them. Please do let me eat my words on this. This will be a successful thread! x

Edited May 19, 2016 by Dandygal76

[sandraW]

Hi DG, like I said in my post whatever you decide is right for you, and yes you have been sneaky but good sneaky. I understand exactly where you are coming from, this is an important time for you son and why should he have to carry that extra burden, of worrying about something that is certainly not imminent. I hope he does well in his exams and has a magical summer. take care sandrax xx

[Dandygal76]

Well, we have just had the letter through from the research company to our GP and the tumour has shrunk by 13%, not the 7% i mentioned previously. It feels better to be on the double figures! I have not heard of many stories of shrinkage to compare it to though. Hopefully it means dad is on the trial drug. Fingers crossed now for the next scan in 5 weeks.

[PCUK Nurse Jeni]

Excellent news Dandygal!

That's such an encouragement.

Jeni.

[Didge]

Brilliant news, DG. Long may it continue x

[Proud Wife]

YAY! YAY! YAY! lets be having more of that news DG. Really, really pleased for you xx

[Dandygal76]

Okay, I need to admit to being a bit of a numpty here which was probably caused by the sheer terror, desperation and total melt down that occurred around the time of being told my dad was terminal. I think everyone here understands the total collapse that happens around that time - life just turns into a freefall for a while. Anyway, I went with dad to the trial on Wednesday because it was the same day as going to see Professor and when reading through the notes I realised he was not on MM-141 CARRIE trial that we were first informed about but he is on a trial called YOSEMITE which has Demcizamab as the trial drug (hours of research wasted - hahaha!). I still cannot see this on the UK database though and so I do not believe it is widely available in the UK and my understanding is it being offered to 8 patients here. The phase 1b trial increased overall median survival to 12.7 months which seems good in comparison to the norm and with the fact all of the doctors seem to believe that my dad is young (ish), fit and otherwise healthy and so should be on the latter part of the median statistic I am hopeful of good results.

So, we went to see Professor and he was lovely and down to earth and the meeting was good. He took us through dads scan and we established that the 'multiple' lesions on his liver was in fact 3 lesions that are tiny and he believes he will be able to get these fully and with 100% results. He disagrees with the trial measurements of dads tumour and has measured it much smaller than them which was interesting but we have found that a lot via different doctors during this whole process. I think it is an art as well as a science in how they interpret the scans. Anyway, I digress, the end result is that he is eligible for the nano knife as well and Professor has some patients in dads situation who are still going strong 4.5 years later which was brilliant news (especially combined with the fact dad's trial seems to be working for him as well). The cost of the Nanoknife is £13k and the cyberknife to the liver is £9k (in case anyone is interested for their own needs).

As for the bone mets which are tiny I have discovered a bit of an unethical way to get them dealt with and I am afraid I am not one to feel too ethical around beating this horrible disease. Apparently, if you are in pain the NHS has to treat them so I am going to try and convince my dad (and this will be difficult) to say he is in pain so they will blast the mets to the bone. It is useful information to have if you are in the same position, have limited funds and are fighting the NHS as well as fighting for your life.

Professor is publishing a paper in 3 months time and he says he has some interesting results. Hopefully, this might start pushing the NHS to get more proactive, especially with treating people with METs who want the chance to fight! I will put it in my diary to ask his PA in a month or so for the date the paper will be ready and let you all know.

The sun was shining yesterday and dad is on his week off and ate loads at a barbecue we had. The combination made me a very happy lady. I never appreciated such simple things so much in all my life.

DG x

[sandraW]

Hi DG,

What fabulous news for you all, I don't blame you for feeling unethical, unfortunately you have to fight for what you need on the NHS nowadays. I look forward to Prof Nanoknife's paper with great interest, but the best news is that is your Dad enjoyed yesterday and you did too. love sandrax xx

[Proud Wife]

Excellent news DG, just excellent, I am smiling widely as I type this message as it's good to hear!

I also had a chuckle at learning he's on a different trial, I am a firm believer in what's meant to be will be and the results are very encouraging.

Can I be a bit of a numpty now and ask for a very brief summary of what makes someone potentially suitable for nanoknife? Would my hubby be a candidate with disease progression and large liver mets? I seem to remember reading somewhere there was a size limit or did I dream that? I have such vivid dreams these days, I truly struggle sometime to distinguish dream from reality! I suppose it's all the worry and stress.

Where was my invite to that BBQ DG

Hope you have an equally nice day today

Much love xxx

[Dandygal76]

Hi PW

I would send the scans to Professor (I think you know who it is) and he will tell you straight away. His PA's e-mail address is easily located on the internet or ask the PC nurses. The research I had seen said 5cm and so I was hugely disappointed when dads read at 5.4cm (or something like that) but I sent the scan anyway and the Prof said the measurements were not correct and he was eligible. I am unsure about the size of the liver mets - I have heard of people with many more mets than dads. There is a facebook group called nanoknife warriors and a few people have been to the Professor with no name for mets so if you are on FB I would definitely ask there. You will also be able to get the contact details on there.

When we saw the Prof he said to us that until he sees the scan he does not know, he just knows what will fit. There is no charge for him to look at the scan and state if it is worth a consultation.

xx

[Proud Wife]

You're a darling, thank you!

You know what, I might just do that! I know hubby's liver mets are quite large, over 7cm as of March I believe but there's no harm is there. I have up to now been happy to go with what hubby's oncologist had to say and then I read stories such as your dads, MSH Mark's and Ruth's all of whom were/are truly inspirational and see that more can possibly be done.

Prof with no name, love it!!!! Yes I do know although I don't do facebook my son does and I will get him to check the warriors out.

Thank you so much xx

[PCUK Nurse Dianne]

Radiotherapy is often used as a treatment to relieve bone pain caused by cancer that has spread into the bone (also known as bony secondaries, bone metastasis or secondary bone cancer.

Radiotherapy is often used to control pain due to bone secondaries for many cancer types and this is of course, also the case for pancreatic cancer that has spread in to the bone.

Bone metastasis can also weaken the bones by damaging healthy bone cells and sometimes can make the bones at more risk of breaking. Radiotherapy, however, can help to make bones stronger and less likely to break. This of course depends on what bones are actually affected in the first instance. Radiotherapy can also treat bones that have fractured.

Radiotherapy for cancer that has spread to bones can also help to prevent new painful areas developing. Having radiotherapy may slow down the cancer and give you a better quality of life for a longer time. However, radiotherapy in this situation won't cure your cancer.

We can all see the benefits of radiotherapy and how it can be beneficial for people who have bone metastasis, especially those who are experiencing pain.

The NHS does offer radiotherapy to people who experience bone pain from radiotherapy. The NHS does not have finite resources and often radiotherapy departments run above and beyond capacity. We are not aware that the NHS ONLY offer radiotherapy to people who experience pain with their bone metastasis, however, this is something that we will look into and the rationale behind any treatment decisions such as this (this may also vary from region to region, depending on capacity of local treating centres?)

However, we do understand the need for patients and loved ones to do their utmost best in researching the best treatment options and providing the best support and information available to make balanced informed decisions about their care and treatment.

We actively encourage people to question the rationale behind treatment decisions, if they wish to do so, to have a questioning mind and to have an open and honest relationship with their treating consultants.

We would openly encourage all patients/carers to be fully open and honest about their medical condition, and about what symptoms that they are experiencing. An effective therapeutic relationship is based on truth and honestly.

We certainly do not advocate people to fabricate the truth about their medical condition, in an attempt to access treatments that they may/may not be eligible for otherwise. This is not in the ethos of the forum community. This may also have detrimental and unforeseen consequences in the future of that persons care. Eg, not able to have radiotherapy at a later point, when it may be more beneficial.

------------------

Advantages (if you are experiencing pain)

 If you are experiencing pain, the radiotherapy may help relieve your symptoms for several months and improve day-to-day life.

 Radiotherapy may also slow down the growth of the cancer in the area that is being treated and help make the bones in that area stronger.

 Radiotherapy works quite quickly and therefore you experience some pain relief within a few weeks (usually).

 You might be able to reduce the dose of any pain-relieving medication that you are taking. This could be useful if they are causing side effects, such as constipation.

Disadvantages

 Radiotherapy, like most treatments, can cause side effects. The risk of side effects depends on which radiotherapy you have, the dose of radiotherapy and where you are having your radiotherapy too.

 Initially, you may actually experience slightly more pain during treatment, and for a few days afterwards. This, however should improve.

 It is possible that the pain may come back after several months. If this happens, you may need further treatment with radiotherapy or other treatments.

Rachel,

Pancreatic Cancer Specialist Nurse,

Pancreatic Cancer UK Support Service

[Dandygal76]

Thank you Rachel. I do totally understand what you are saying but I can only do what is in the best interests of my dad. He has paid his tax and NI all his life and will not likely even draw his pension for all his efforts. The NHS have not offered him much to be honest and waste horrendous amounts of money - trust me on that because I have audited hospitals. Some people do come back from stage IV cancer and I will use every means at my disposal to give my dad the chance of being one of them. As you have stated, radiotherapy can extend his life and the longer he keeps going the more treatment options will become available. If it was fair world he would not even have this cancer but the NHS treatment of stage IV pancreatic cancer is truly awful. We all know the nanoknife and other treatments extend lives for people with stage IV pancreatic cancer. But NICE is waiting on firm evidence of its safety and proven results? There is no money in the Nanoknife so no one is funding the trials. So everyone without means is reading my thread re my dads treatment and options and they are powerless and it is not right. I know you all advocate very hard for everyone with pancreatic cancer and you do a fantastic job but we all know the service provided by the NHS is inadequate. My dad has had a 13% RECIST reduction with a drug the NHS will only fund in Wales and Scotland - I really am in no mood to see the bigger picture of finite resources. I hope I cause you no offense with this response, I truly do have the greatest respect for all of you.

[Dandygal76]

I also should thank you because one of you spoke to my mum the other day about my dad having copious amounts of saliva etc which was making him truly miserable. It is the third time you have come though for us with solutions to ease his suffering. Mum said you were lovely - whoever it was that spoke to her. x

[Dandygal76]

Well interestingly the trial drug now stops for a month and everyone just get chemo and then back on it after the month (or placebo). My dad is chit chatting away after chemo yesterday and seems really happy. A whole new man and it is wonderful. I am pretty sure now he is getting the trial drug. I am a bit nervous about the break though because I just want to keep throwing everything at the pesky thing. But I will stop obsessing and try and enjoy the good times. x

[sandraW]

Hi Dandy,

That's great to hear Dad is feeling chipper, yes listen to your own advice and just enjoy.

As for the discussion with Rachel, different points of view, from different sides but of course both

absolutely correct! take care love sandrax xx