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

Hi DG

as I hope you had read, I can only use phone at moment to post which is driving me bonkers as it does not behave! Just wanted to check in and ask how your dad is doing?

Thinking of you and btw, I love your posts on hubby a thread and it's LOVELY to know my forum family are thinking of me.

Much love xx

Thanks PW - I hope you are okay. My dad is doing well and he has just finished week 3 of chemo and is heading for his week break feeling well. So, that is something we are looking forwards to. I am feeling a little less embroiled and much calmer by taking a couple days from posting and researching about PC.

We are moving on 20th August and so I have decided to tell my son the full story next week so that he has a chance to settle a bit whilst still living in the same village as Granddad. I am hoping it will not be quite the meltdown we all had on the 5th February when we were told 6 months because we have moved on from this in terms of hope for the future and treatment options available to dad. It will not be such a futile story and we feel more in control. That in itself makes the delay in telling him the right decision to me because we could barely cope ourselves at the time. At least with the move they can abandon doing up my son's room and driving me crazy with that.

We have had some good news as well in that the trial institute have agreed to profile dad's tumour for free (which saves huge hassle getting things to America) but I am waiting on Oxford to call us about the biopsy they took - which is the original sample before chemo and trial drugs. There is no e-mail addresses for the hospital and dad wants me to deal with it because I have done all of the research and know exactly what I want to happen. So, I have written a letter from dad and sent it by special delivery asking them to make contact and giving permission for them to speak to me. I have sent this to the consultant and the pathologist. I have requested that the tumour sample is sent to Harley Street and asked how we can facilitate this. I am just hoping they still have the sample now and that it is enough. It was just such a stroke of luck the Institute said they could do it and it will be interesting to see how this turns out.

So, the BBQ theme continues tomorrow in the lovely sunshine we have this weekend and Tuesday is looking so great I may see if I can get dad to go to the dog racing which he loves doing but tiredness may be a problem. We will see how we go.

I must not forget about this quality time around researching etc especially as I have witnessed first hand on the this forum threads how quickly things can change. A couple of days stepping away from the computer really has helped me.

Have a peaceful weekend x

Hi DG, welcome back and I'm pleased that you had a nice break! I agree that it's a good idea to have some down-time from the forum as it can be very emotionally draining. To the folks who have been here for a long time, I don't know how you do it. The trouble with not having many frequent posters here is that it can become more onerous for the few that are here a lot.

I'm so pleased to hear that your Dad is getting his tumour profiled for free, that's really excellent. Fingers crossed there's enough tissue for the testing.

W&M xx

Hi DG,

This is really great news about the tumour profiling!

I hope that you have some correspondence from Oxford soon, and that the profiling gives you some more useful information.

It sounds lovely to take Dad to the dogs - I hope that he is well enough to go, and enjoy it. And also, that he is enjoying the weather!

Please do remember to use a good sun cream, with a good Sun protection factor if he is out in it, as some chemotherapy can cause sensitivity to the sun, and the person would burn easily. (Its meant to only be 1 - 2 specific drugs, but we found that patients on several drugs had this happen - so, just be sensible - the usual sun care).

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse,

Support Team.

Thanks Jeni,

I am getting an understanding the institute has one of the worlds most high profile geneticist in this area that comes once a week. Before I post about a potential UK route to have tumour profiled in UK I was going to explore with them the potential to market this wider. I was wrong that it was free... my dads text message was not clear but they said it will cost around £1000 in the consultation. But in general, to start profiling PC and move forwards in this will be a good advance for PC in UK, even if it does start with private patients. I will e-mail you later but you have more clout than me on these things and as an organisation it may be something you want to look into. It is definitely one of the next steps in PC treatments to be more thoroughly tested. Regardless of that though... the logistics of trying to get profiling in the USA was difficult and it can only help PC patients to have a UK option.

Your dad is so very lucky to have you DG, that much is very very clear. Please make sure you continue to look after yourself though, as you found, a couple of days off was much needed. Your dad is pretty amazing too btw!!

Lots of love, thinking of you both daily xx

Hello DG,

I am thinking about you and hoping you are not getting too exhausted with moving and caring for Dad. M xx

Hey All

I know you are all there supporting the PC cause with me but you certainly all have enough on your own plates to deal with rather than worry about me and we are doing reasonably okay except dad has started taking Metformin again to counter high blood sugar and the eating / taste issues seem to have started up again so it really does have to be that causing it. I have asked the GP to refer him to an endocrinologist and see if they can help with the blood sugar because we really need help with it. The numbness in his toes could also be diabetic neuropathy and not chemo neuropathy (or both). Either way I am keen to take every measure we can to try and prevent it taking hold.

We need his status to be good for when I take on the NHS who seem to have wavered slightly that dad will get Forfirinox. Not because of dads status but because they are now saying it is a 1st line treatment. I am forcing myself to stay calm over this right now because we have the oncologist letter at the start stating dad could have it after the trial and I have my very 1st thread on here that debated trial v Forfirinox and it clearly establishes we based decisions on the fact he would get Forfirinox next and this would be his only chance to get Abraxine. It is critical to the plan for dad to undertake Nanoknife with Forfirinox at the same time. I am breathing deeply and forcing myself to stay in a calm place for now because who knows what the decision will be when it does happen and who knows what the profiling will show and chances are, my new beginnings of research will get a referral to an NHS oncologist who can think outside the box a bit (and is willing to). Further, there may be different views when Professor paper is published (or not - I could be pinning too much on this).

Until I can get an answer as to this original tumour biopsy from Oxford we are just bumbling along and did I mention... I am breathing deeply. We have another 5 weeks before he gets scanned but dad seems to have formed the impression he is on a positive trial, he for some reason feels the trial is throwing all sorts of resource at it and the doctors are very positive when discussing results. Dare I start to hope he may be the lucky one in this dreadful journey. I hope PW is not right on one thing... being able to tempt fate.

I will just plod along with my posts as I do and will take it for granted that you are all there, even if you cannot post.

Night all. One day at a time will get us all through this, wherever we are on the journey. x

DG, sounds like you have an awful lot to contend with at the moment. Thinking of you and hoping that step by step everything falls into place for your Dad.

Also I'm wondering how critical the biopsy is as I think it will only be a snapshot of the tumour's molecular makeup at that time and that your Dad's current treatment may have altered it.

W&M xx

Dandy...... and breathe! Fingers crossed for you that dad is one of the lucky ones, and we are here, reading and hoping along with you for a great outcome, just trying to wean myself off the forum as I am going on holiday soon for 3 weeks and won't have internet access. Thinking of you along with all the others take care love sandrax xx

Hope you have a lovely holiday Sandra. W&M xx

DG, the following July 2016 article talks favourably about 2nd line chemo - especially Folfirinox! - for stage 4 PC. Maybe something to share with your oncologist? :

Second-line treatment feasible for advanced pancreatic cancer

medwireNews: Second-line therapy is supported for patients with metastatic pancreatic cancer, with fluoropyrimidine-containing regimens providing substantial benefits.

https://www.medwirenews.com/oncology/second-line-treatment-feasible-for-advanced-pancreatic-cancer/10348244

Sandra, I hope you have a lovely holiday and that you get some much deserved rest and peace. x

W&M I need to get the tumour profiling done whilst we have a chance, it may not come to any fruition but the trial doctors thought it was a good idea and I truly believe knowledge is power with these things and if there is a 0.01% we will find something that may help then we cannot leave it. We just have to keep throwing everything we have at it. We could always do it again at a later date if necessary.

Also, thank you for the info on Forfirinox as a second line treatment and I will keep it in the armoury. I am in two minds whether to start lobbying the NHS now or not because things can change before now and when dad gets there. Also, the oncologist was vague and non-committal rather than a complete definitive no and that is difficult to argue. I sort of want to do it now and send it all now so we are ready (and because we know decision making on the NHS can take a while) but I also do not want to create necessary waves when NHS protocols can and do change and everyone is enjoying some quality time.

I suspect however by this time next week I will buckle and all the info will be in the oncologist in-tray though.

xx

Hiya DG, how are you and how's Dad doing? I've hated not being able to communicate properly on here, I had so much support at the time I really needed it, I want to be here for you guys too.

For what it's worth, I think you will buckle too!! All I can say is trust your instincts and run with what you feel is right but make that decision with a clear and fresh mind and not in the heat of the moment.

Much love and cyber hugs coming your way now xxxx

How does the saying go PW... no news is good news isn't it? My dad is doing great.. putting on weight and looking really well. Still a bit concerned with numbness in his toes but I am working of supportive solutions for that. I still cannot believe we went from him nearly ditching the trial several weeks back to where we are now. I never thought we would resolve the issues he had. His quality of life has vastly improved.

We did tell my son last week the true extent of things and that was sad but so much better than telling him when we were all in shock at the beginning. It was more manageable. Kids really are very resilient though are they not. He is visiting dad much more but seems to have settled. I think not having the completely hopeless NHS message and having positives really helped.

And yes, you are right... I have buckled but I am also glad I sat on it a while. As fellow forum members have probably gathered I can knee jerk if I feel I have been put into a corner and that does not always produce the best outcomes. I am currently writing a letter to say we came away from the meeting a bit confused and need clarification as to the next steps because we understood he could get forfirnox next (letter attached), that our decision to enter trial was a direct result of that advice (my first forum thread attached) and that there is evidence to suggest that it is beneficial as a second line treatment (W&M evidence attached). So, rather than 'take on' the NHS that I was going to do I am going to try the informed reasoning route. If they come back no Forfirinox though then I am afraid the gloves are off and I don't think it will be pretty! Mental note to self.... sit on it a few days either way! Hahahaha!

Much love to you all. x

HA! Seems I know you well! Your approach I think is very fair and sensible and the right way forward. If the gloves come off though, tell me and I will run and hide!

I can't tell you how happy I am to hear that your dad's quality of life has improved so drastically. Brilliant sweetheart, just brilliant. xxx

I love this positive video on the cancer fight and the charity ethos, including PC...

http://www.aacancer.org/professorjustinstebbing.html

it is an inspirational and educational recording. I hope it can stay but not sure on the rules. We need game changers in pc and we need inspiration.

And on our fight continues, we have just heard from Oxford that they are arranging the transfer of dads original tumour sample to the institute.

What a double edged sword though... I am pleased but nervous of what we will find.

I am off to work now but will catch up with everyone else later today. I hope all of you have a reasonable day, wherever you are on the journey. x

How long will it all take DG?

Needless to say I will be crossing fingers and toes for you all xx

Hey PW... I have no idea how long it will take and also no idea what we will do with the info yet! I am making it up as I go along! Hahahaha. The trial seems positive over it and I think they will help us work it all out but regardless, some trials only do certain mutations and I think it may become more prominent in treatments and so forearming will never hurt - well it will if it all comes back with negative mutations that has been passed down the bloodline as well - but let's stay positive and see what is what and deal with it then. 5th August was dads 6 months terminal diagnoses and so far (touch wood) we are ticking along okay. x

Hi DG, great to hear that things are ticking along OK, long may that continue.

Just to respond to something you said on Joanna's thread:

"I still do not understand why some trial cannot go for stage IV... forfinox, immunogy latest drug, nanoknife, cyberknife, hollistic approaches. I know it is not realistic the pharma companies will do this but there would be scope for a joint charity / funding body approach."

....my take on this approach is that there's no getting away from the fact that the cost/per patient would be sky-high. Where are the charities meant to get the money from? The British publics' purses aren't that deep. Isn't it better to focus the fund-raising on finding more effective and affordable new treatments and preventative treatments.

W&M xx

I know what you mean W&M but there are cancer funds out there that can be applied for... I am sure I have seen them advertising funds. I am talking about combining existing therapies rather than developing one in isolation so that people can get real data on the best route rather than feeling the way through like we have to. Whether US or UK or a combination there are significant funds out there. People are already eligible for Forlfirinox and that will be paid for anyway on NHS and so a trial with the rest would not necessarily have to go into unrealistic amounts. I was not thinking charities on their own but combined with a real approach using a decent University and applying to cancer funds. I am just putting it out there really, it would need a much more detailed review and experiences of staff on the front line like PCUK. I think my main frustration is that the trials mainly use Abraxine because that has been historically set as a baseline comparative marker to test the new drugs. Because they need this it seems they will not move onto Folfirinox and I think my dad's best chance would have been. Folfirinox has been established to be the leading chemo at present and you have to be fit to get on the trials. If dad had been offered a choice of trial with Folfirinox or one with Abraxine we would have chosen the former.

I think nano etc are more affordable treatments for the NHS (which is why they are not trialed properly - no money in it) however I definitely agree with you that preventative treatments and early detection are the way to go on the whole. Solve the problem at the root of things.

We are 3 weeks from scan date and still on the trial drug break (still getting Abrax and Gem) and dad is starting to get an on and off niggle in his back. This was one of his first symptoms and the first symptom to go on the trial so it is not great to be having this now. He says the original pain was constant and this isn't (even though it is in the same place) but what I would do right now for the scan to be sooner so we can see what is going on. Everything feels like an eternity when waiting on things around PC.

Sorry to hear this DG, I'm crossing my fingers that it's nothing. xx

I too am sorry to hear this.

Ask you dad if the pain comes on after eating or lying down. Is it relieved by bending forwards? My hubby had intermittent back pain and never constant until right at the end.

Personally, I wouldn't wait 3 weeks for a scan and then the inevitable wait for the results. If I remember rightly, you were going to self fund nanoknife, so without being terribly nosey about your finances which is none of my business, it is not worth paying for a scan privately. I used to book an appointment for a scan (courtesy of BUPA) and an appointment with consultant a few days later so that the radiologist reported back quickly. It can be done if you push for it and like me, I know you are not afraid to push when something is urgent.

I don't want to cause you any concern but I care deeply that your Dad is one of the luckier ones and I just think 3 weeks is too long to wait if something is amiss.

Keep us posted sweetheart and stay strong xxx