A forum for advanced pancreatic cancer issues

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Joined: Mon Sep 30, 2013 2:32 pm

Starting a long long journey

Postby davidandsam » Wed Oct 02, 2013 10:36 am

Hello to all

I have been sitting in the wings for a few weeks now watching with amazement how the members of this forum pull each other together! From big hugs to logical advice and experience it has been a real inspiration for me.

My story like so many others started with a bit of back pain, a slight stomach ache, a little fatigue and then “WALLOP” fully blown stage IV inoperable Pancreatic cancer with liver mets, Marvellous !!
I have been a keen triathlete for a while now and even managed a decent finish (50 +) in the Henley Triathlon this year. You can imagine my despair when I found out the worst, less than four weeks after this achievement. How can this happen to a fit 50 year old, with an amazing partner and two even more amazing offspring ? a daughter coming up to four and a son coming up to..ahem 21, two dogs and 3 horses!. It seems illogical, unfair and downright rude to push itself into my already full life.

We spent the first week as a family falling to pieces as you may imagine, shock, despair, denial and shock again! Then slowly but surely started to get angry with this bloody thing. We have assembled a marvellous support network of friends and family around us and we have decided as a team to fight this thing head on.

I have been extremely lucky in finding a very supportive oncologist (and the support network surrounding him) who has assured me he will do everything in his power to help my cause. I know that the prognosis is poor, I know that the median of statistics are negative, but what the heck, I am not average in my opinion and I have certainly got more fight and drive in me than administration !

So where do we go now?
Early August I was fitted with a Central line to help with the Chemotherapy and shortly afterwards started my first cycle of Folfirinox /5Fu (or Furry fox as it is affectionately known in our house !) I seem to be tolerating the treatment reasonably well and will be having my fourth cycle in the second week of October followed by an interim CT scan on the 17th.

Life is still a bit of a blur but I am ever hopeful that we can beat this thing despite the long odds. I continue to receive amazing support from my network and I would dearly like to add my support to any member of the forum based upon my somewhat limited experience to date.

My goal?: Get back into training as soon as I feel able and raise funds and awareness for Pancreatic Cancer UK

It’s going to be a long long journey but my bag is packed and I am up for the fight !, My partner and absolute rock Samantha is currently working on a blog site called “ not today I haven’t got time” which just about sums it up. I will post more details in due course.

Hope to hear from you soon


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Re: Starting a long long journey

Postby KATB » Wed Oct 02, 2013 1:41 pm

Welcome to our forum family David.

I'm so sorry that you find yourself here but, as you have already found, we are a friendly bunch and always here to listen, share experiences and give advice where we can.

Sounds as though you have plenty of fight in you and that network of support will be invaluable - you are so lucky to have it.

Chin up, get your game face on and get ready to kick some butt!


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Re: Starting a long long journey

Postby J_T » Wed Oct 02, 2013 4:06 pm

Hi David and welcome. That's an amazing introduction and well done on your triathalon! I can well imagine your shock on diagnosis after completing an event as gruelling as that!

Sounds like you have an excellent team in place and you have your battle lines drawn!

I'm sure you are already aware, having read a lot of posts already, that Jeni and Dianne are available Mon-Fri by phone or email for any help and advice, their input has been invaluable to us.

Keep us up to date with your progress.


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Re: Starting a long long journey

Postby davidandsam » Wed Oct 02, 2013 5:05 pm

Dear Julia and Kate

Many thanks for your warm welcome, it's true we have battle lines drawn but we are keeping as close as We can to the reality of the situation so I do hope to post developments good (hopefully) or otherwise along our journey. Frankly speaking the positive attitude has been helped quite a bit by reading about the amazing people in the World ( this forum included) who will not accept having this retched disease in and around them!

Thanks again for the warm welcome

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Re: Starting a long long journey

Postby Birchen » Wed Oct 02, 2013 5:36 pm

Hello David
Was very sorry to read of your diagnosis but it seems that most people are well until they finally get something not quite right and then their world is turned upside down when they are told they have pc.
We are still trying to come to terms with it since June but my husband is brilliant and is enjoying golf whenever the weather permits. He is being remarkable and living his life every day exactly as before, although he sometimes gets a bit emotional when all the family are together.
Keep positive Lyn

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Re: Starting a long long journey

Postby EmmaR » Wed Oct 02, 2013 9:58 pm

Hello David I did welcome you to the place no one wants to be on a post of another new person Lesley but just incase you didn't read it welcome to this friendly informed forum . Your story is very similar to my hubby's but he is a fit 70 year old so we can't complain compared to you 50 years if like me your family must be overwhelmed with sadness but like you said the fight must go on battle lines must be drawn plans made and hopeful we might win if only some extra time with those we love .
Kind Regards

PCUK Nurse Jeni
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Re: Starting a long long journey

Postby PCUK Nurse Jeni » Thu Oct 03, 2013 4:08 pm

Hi David,

Welcome to the forums and thanks for posting.

I am really sorry to hear of this diagnosis you have been dealt, but its great that you have supportive healthcare professionals around you, as well as your family. Also great that you were so fit, as this of course allows you to withstand the stronger drugs. Great to hear that you are on folfirinox also (love the furry fox bit! how cool!) Tough regime, but sounds like you are handling it.

Just to say, if you ever have any questions, or would like anything explaining, please do not hesitate to contact us on support@pancreaticcancer.org.uk. Great also to have the goal to fund raise - wow! Thank you. Do take your time for a while though, and let this chemo do what it does in the meantime. It would be lovely to have a link to your partners blog when you are able.

Kind regards,

Jeni, Support Team.

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Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Thu Oct 03, 2013 4:36 pm

Dear Jeni

Many thanks for your words of support. I will let you have the link to Samantha's site as and when she has finished the "creation stage" she is already seeing purple so we are well on our way!

Speak soon


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Re: Starting a long long journey

Postby Winkle » Thu Oct 03, 2013 6:16 pm

Hi David,
I have tried to post a reply before, so if you have received it sorry for repeating myself.
I am 52, fairly fit, certainly not in your league but not too bad.
I went in with suspected gall stones, Wednesday 11th September, after the ultra sound where they couldn't find any gallstones, I had a CT scan which showed a mass in my pancreas 2.5 cms. and an adhesion on my liver of 2.4 cms.
I was told by my hospital that it was inoperable, I had heard through my cousin that the Royal Liverpool
were very up on pancreatic cancer surgery, so I had my scans sent there. They agreed with my local hospital, inoperable.
When I went to see the cancer centre and asked to be considered on ay clinical trail, they offered my the PET scan and keeping my biopsy for future cases. I felt as if that was it. Then I saw this site.
I phone and spoke to Diane and asked her what she would do and she mentioned Folfirinox. I read your posts. I then spoke to my friend who is an oncologist at the Royal Marsden, she is a lung cancer specialist, but she spoke to the pancreatic specialist about me. He agreed with Diane and said he would try the folfirinox.
I think from what I have read that we have similar conditions, I would be so grateful if you could give me some idea what to expect.
Lots of love and all the best with your scans

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Re: Starting a long long journey

Postby dabber66 » Thu Oct 03, 2013 8:02 pm

Hello David, I would also just like to say, welcome to this wonderful site, and as you can see, there is support by the bucket full. You are so positive - keep positive, it really does help, you are very lucky to have such a supportive family. Carole.

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Joined: Tue Jan 15, 2013 8:12 pm

Re: Starting a long long journey

Postby LindaH » Fri Oct 04, 2013 8:44 am

Hi David,

Ditto really what everyone else says in their posts. I really do not know what I would have done without the support of (I call them friends, though we have never met face to face) so, friends on this PC website.

Jeni and Dianne are an absolute God send....

Unfortunately, this disease holds no qualms about who it attacks, fit, young, old and of course the problems lies in the fact that by the time you are diagnosed it's often too late.

My story is similar, quite fit...ish, working in a school which is sport orientated so no getting away from it, then suddenly began feeling bloated and ballooned with weight gain, then suddenly lost weight....crazy. My GP even treated me for wheat intolerance amongst other treatments, but it wasn't until my skin turned yellow and my eyesight deteriorated that I was rushed into hospital and told the news I had a 6cm tumour in my Pancreas which was inoperable.

I laughed when the doctor at the hospital first told me...."What do you mean inoperable?" I'd had breast cancer in 2007 coupled with a Mastectomy then given the all clear five years later, to tell me this was inoperable, I felt was ludicrous.

Fortunately, like you my Oncologist is a wonderful man and is right with me doing all he can for me. I write to him saying can I try this, can I try that and I feel I can see his eyes rolling, but I couldn't be more wrong, he loves my ambition to fight the - I call it an Alien - which has dared to invade my body.

My tumour has reduced in size with my first initial session of Chemo Gemcitabine and Cisplatin, but "IF" I require Chemo again, I will ask him about 'Furry Fox' as I tolerated my Chemo quite well, but like yourself I long to get back to the fitness I had before all this happened and each day is a new step and whilst at the moment I take the steps gingerly, I will soon be running in stead of walking.

Thank you for sharing your story David it's always a privilege to read other peoples experiences and wonderful how people open up telling warts and all, very much appreciated; thank you.

Keep fighting, I am.

Linda x

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Re: Starting a long long journey

Postby davidandsam » Fri Oct 04, 2013 9:27 am

Dear Linda, Kathy et al

Thanks again for your positive comments. As for the furry fox ( folfirinox) the jury is still out in my case. I was informed it is an aggressive treatment which has shown positive results and is still quite a new solution. I asked my oncologist for the full beans. Whatever he had I wanted (and quickly) and we will deal with the fall out along the way. So off we went down the furry fox route based upon general health fitness and age the dosage was created. Apparently I am on the maximum dosage based upon a very scientific well-trodden equation (and protocol) and I am approaching cycle 4 next week.
Having a central line fitted is a blessing though! It means I can be hooked up for treatment as an in-patient which only lasts a few hours and then discharged the same day with me portable pump which administers 5/FU for 46 hours. After the 46 hours my Rock-Samantha gets to play nurse and disconnects me and flushes my line for me. Great for Sam as she always wanted to be a vet and when asked if she was happy to administer the disconnection and flush the line she said and I quote “ yeah no problem he can’t be any more complicated than my horses and I give them injections and clean wounds all the time” great so now I am a horse !!
The three cycles so far have passed without major drama, days 1-3 feel very tired/days 4-6 slightly more human/days 8-10 amazing!/days 10 13 start to feel the effects of the good cells and the naughty cells being attacked by the furry fox. All in all it is tolerable and I actually look forward to the next cycle!
I have had no major side effects but a little bit of everything, hence the word tolerable above. I feel that the anxiety of going into the next cycle has been replaced by positivity, and why shouldn’t it be? I am doing everything I can right now to fight this thing head on and if that doesn’t keep your upper lip stiff then nothing will !.
The jury is still out because I really don’t know what to expect from the CT results. I am told that the best we can expect is stability, frankly speaking I want to see more but I am inpatient and all around me are coaching me to accept stability (like I am listening!) so we will see.

I know not to get my hopes up and it is a long old journey so I will deal with the results when I get them. No point fretting over something you can’t directly control in my opinion.
Sorry for the length of this post but it is such a tonic to be able to ramble in the hope that it might inspire someone somewhere in our cloudy World. I would say if you have a chance to get “Furry foxed” then go for it ! It might knock you about a bit but so what, it is nothing in comparison to what you are dealing with on a daily basis !

Weekend is coming so enjoy it !


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Re: Starting a long long journey

Postby Winkle » Fri Oct 04, 2013 3:50 pm

Hi David,

I went to the clinic this morning, I had sent a email saying that I wanted to go for the folfirinox and that I had made an appointment with another surgeon after our appointment. I went with my great friend Kirstie, we went, they didn't think much of Folfirinox but they agreed to let me have it. Box one ticked. I then went to see a saint, he showed me my scans, showed me positions of important veins and connections. He then said
1.) It could be as you have been diagnosed, you have a mass in the pancreas and a secondary in your liver. Lets try the folfirinox, see if we can get some shrinkage and if we do look again at the possibility of surgery.
2.) If the biopsy is inconclusive he would take another biopsy from the liver and pancreas to see exactly where we are.
3.) The tumours could be of another kind which although not as common, with chemical treatment would allow both the liver and the pancreas to be operated on.
4.) And this is the only time I have never wanted an abscess so much in my life, the lesion in my liver could be an abscess caused by the excess bile from before the stent was fitted.
I know and he explained that there was just a small possibility, but from "We will monitor your deteriation, it may help others" To a hope in hell is good for me. I am seeing him again on Wednesday when we have the results from my biopsy.

Glad to hear David that you are coping with the strongest dose of folirinox, I have been reading everything I can about it, but to get personal experience from you is so helpful. Also the fact that I was never offered Folfirinox and only through this site and further enquiries did I find out it was available and may be suitable for me. It is lucky for us that this site exists. I wouldn't have felt strong enough to ask for a treatment that I wouldn't know existed.

All the best to everyone lots of love
Kathy xx

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Re: Starting a long long journey

Postby davidandsam » Fri Oct 04, 2013 4:36 pm

Dear Kathy

You have a plan ! that is great news and gives you milestones and goals to aim for ! I don't know about you but from my perspective I need something to aim for ! I am in the same boat, inoperable until proved otherwise, I am ever hopeful that the good old furry fox will do it's stuff reduce the size of the ... "insert your own expletive here" and push me closer to surgery.

Best shot for me would be "Nano-knife" which makes for interesting reading and already discussed with my oncologist. Like everything with this retched thing nothing is certain but we have hope !

It's worth trawling through some of the older posts as the amount of knowledge and experience is vast !

I do hope you have a good result from the biopsy(s)

Good luck and keep focussed


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Re: Starting a long long journey

Postby Slewis7313 » Fri Oct 04, 2013 5:39 pm

Hi Kathy, your comments regarding Folforinox are not uncommon. I was given GemCap and would not have ever questioned it as I knew nothing about the subject at the time. That said, my treatment was based on a previous trial which proved to be the correct option for me.
I recently sat in on a NICE workshop where Abraxene was being assessed for possible introduction in the UK. One of the experts on the workshop was a senior Oncologist who advised on the practicalities of treatment. She was quite adamant that the best treament for Pancreatic Cancer was Folfirinox as long as the patient was well enough to deal with it. She went on to say she was frustrated at having patients referred to her for Folfirinox treatment when the outlying Cancer Centres should be administering this themselves as the preferred medication! Certainly was an eye-opener for me and you have obviously done well to get them to take up this option.

Good luck!