Starting a long long journey

[davidandsam]

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

David

[KATB]

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!

Love,

Kate

x

[J_T]

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.

Julia

[davidandsam]

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

David

[Birchen]

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

[EmmaR]

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

EmmaR

[PCUK Nurse Jeni]

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.

[davidandsam]

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

David

[Winkle]

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 xx

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 xx, 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

Kathy

[dabber66]

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.

[LindaH]

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

[davidandsam]

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 !

David

[Winkle]

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

[davidandsam]

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

David

[Slewis7313]

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!

Steve

[J_T]

Hi Kathy, welcome to the forum that no-one wants to be on! It is a great place though!

Just an idea, why don't you start your own thread then we can follow your story more easily?

Seems you are already getting good advice from here, keep us up to date.

David good to hear you are tolerating the furry fox well. Onwards and upwards!

Julia

[Winkle]

Hi David,

I had my Hickman Line fitted the Thursday before last, unfortunately got home from the hospital and started suffering massive pain, in the end we called the ambulance. I ended up staying in for two weeks, I had infection of the pancreas and the gall bladder, they finally got the infection under control and my first course of Folfirinox starts this Friday.

I have had the stuffing knocked out of me, and instead of looking forward to starting Folfirinox and taking steps to fight this bloody thing, I am scared to death. Please let me know how you are going on and if you feel up to it what should I expect.

Thank You

Kathy

[Cathy]

Hi Kathy (from another Cathy)

Sorry to hear you have been poorly. You poor thing!

There is LOADS on this forum about FOLFIRONOX. My parter had 8 cycles earlier this year and others did as well (different nos cycles).

I've posted a couple of links below. Unhelpfully I think everyone deals with it differently. My advice would be

Take a big bag with you - food, drink, iPad (or whatever reading you need) - it can be a long day. Jonathan (my partner) took loads and then just slept

Irinotecan is a bit of a b***er. It can give you stomach cramp and generally you get an injection of atropine for this (acts as anti-spasmodic) They may give the infusion over a longer period or reduce it if there is an issue or up the painkiller as they did for us (Jonathan had it in the tummy as it was less stingy than the arm). It ceased to be an issue after the first infusion

Keep a diary of side effects. This for us was invaluable in those early stages. You can then plan ahead to a certain degree and tinker with the meds to find what suits

Tinglyness. Keep wrapped up now the weather is getting cooler

You don't need to be tied to the district nurses if you don't want to be. We learnt how to flush the Picc (which we had), disconnect the pump and do the injections so we had freedom away from the fortnightly session.

Links below....

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=991&start=30#p7828

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1015&start=15#p7983

Good luck.

Cathy xx

[davidandsam]

Hi Kathy I am sorry to hear that you had a bit of a set back to say the least ! still it sounds as if you are rallying round and ready for the fight. Cathy's words are invaluable and I would say in my experience so far (5 Cycles) each time is a little different and I would suggest you post up your concerns as they come on one by one. I have been lucky to have nearly all the symptoms but in light moderation rather than full on !

The one thing I would say is keep warm and as far away from potential sources of infection as you can. I was wallaped with low neutrophils after my first session (the stuff that builds our immune system up / white bllod cells) as the Furry fox attacks both the nasty cells and the good cells it left me little to fight off further inection!

They dropped to 0.6 which is quite low, I had a boost of neulasta (which continues to this day) and has raised the count to anywhere between 10 and 12 much better ! the last thing you need is another trip to hospital to have anti biotics to fight an infection. I guess like me you want to crack on without interuption!

I know you have had a couple of stinky weeks but get your game face on for Friday and let us know how you get on !

Good luck !

David

[Winkle]

Hi Cathy and David, and everyone else,

Thank you for your replies. I will take your advice. it is amazing to have you there, as much as my poor family try, I feel so guilty for putting them all through this, so this forum is a way to voice my fears without

upsetting my family more than they already are. I am just such a cry baby at the minute.

I will ring Jeni, as my oncology nurse here has never dealt with Folfirinox, only 8 people from x (edited-moderator) have had Folfirinox. My pain doctor had never heard of it, today he started to look it up and wants to be informed and is supportive. The original two oncologists at x (edited-moderator) dismissed Folfirinox as too toxic.

Thank goodness my consultant is all in favour, he was recommended by a friend on who he performed a whipple that took 15 hours, no one else would touch him. Fortunately for my friend it was only in the pancreas. He described the consultant as brilliant and tenacious, when you are facing this you need brilliant and tenacious

.

Thank you

Kathy xxx

[InfoForMum]

Hiya,

Just wanted to add my voice to David's and Cathy's. Mum is now on her 3rd cycle. I've posted in great (some on here might say exhausting) detail about loads of stuff. Less experienced and less far on than many, but a link below to my current thread in case it's of use.

1st cycle was hardish. Mum was geared up for utter misery. It wasn't that. It was lots of nausea (sorted with change of antiemetic), moderate tingliness in fingers/toes (avoided by having gloves by fridge to remind not to pick up cold stuff), dip in appetite until day 9 (also much better when antiemetic sorted and tackled with lots of snacking and trying not to worry about what was eaten).

Just on that last bit. Mum has weighed in at the same weight at the start of every cycle. That's after 3 days start of cycle 1 eating very little and loss of appetite after each. Eating stodge and whatever takes her fancy has served her well!

Hope some of this helps and thread below (and sorry for hijacking yours David!)

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168

Sarah

XX

[davidandsam]

Dear Sarah et al

No problem for hijacking my thread you go for it any time, we have to share all the news we have by any means!

Quick update from my side, moving forward to cycle 5 next week of the good old Furry Fox and so far so good (sort of if you consider the usual sie effects but nothing to write home about!)

Had a 8 week CT last week and a meet with my amazing oncologist and his even more inspiring support nurse on Saturday and we have progress !!

Looks like furry fox is doing something as the liver mets have reduced by 10~15% and the big kahoona in the panc is stable (about 4CM but I will squeeze it smaller with my own hands if I have to !!!)

Our Oncologist is quite a radical, he wants to push the boundaries which is why we chose him, we are now considering Nano -Knife surgery to try and break holes in the Tumour to allow the chemo to have direct access to destroy it from the inside out.

Of course it's a long shot and nothing is certain but perhaps a series (4~5) of the nano-knife plus furry fox may just make life a little easier in the long run, nothing ventured and nothing gained is my attitude towards this and I am all for it !

So I now await further consultations with a man with a "Nano knife" in his hand (actually it isn't a knife its several electrodes and is a non-evasive surgery.) It' s a relatively new technique but we have to push boundaries for the others that follow right?

I will keep you posted but for now I have at least a broader smile on my face on this gorgeous Autumn day (poetic license please )

Good luck to all of you as ever !

David

[marie souter]

Welcome David,

Wow I love your non defeatist attitude ... I totally agree with you about the statistics .. according to statistics my mum should be gone within 3 - 6 mths without chemo .. however we're still chugging along at 8 mths and counting ... I think a lot is to be said about positive mental attitude and doing the right things 'statistics do not define you' and it worries me that some people would just literally 'wave the white flag' when they see them.. luckily my mom has me fighting her corner and I told her from day 1 .. eat well .. drink lots .. avoid anyone with any kind of cold/fly/virus/stomach bug like the plague .. get up everyday, get bathe, get dressed .. LIVE LIFE NORMALLY .. try and see your life as 'living with cancer' rather than 'dying of cancer' focus on today and tomorrow ... well, what will happen will happen...she's kept this attitude and I am sure it's whats kept her here so long .. expect a rollercoaster ride .. so many people at the first hurdle were saying 'oh shes on that road' ...avoid those people.. they drain you and its not what you need .. expect to have your bad days .. it doesnt mean this is it ... my moms had 6 bad episodes where shes been bed-bound then a week later back out shopping ... I love the saying ... 'Don't count the days, make the days count' ..

Good luck David you sound like you have an amazing support network and it makes all the difference ..

Hugz Marie

[davidandsam]

Dear Marie

Many thanks for your inspiring words! Living with cancer is my primary focus right now!

I have hit a brick wall a couple of times but leaning on the support here and at home helps massively !

Good luck to your Mum!

David

[cestrian]

Sadly just lost my brother - in -law to cancer of the oesophagus but at 84 and having lost my sister, his beloved wife of 60 years from cancer last year he was ready to leave this world and felt he had little cause to fight on. I can't really feel sorrowful, only grateful that somewhere they are together again and his suffering is ended and his family are now blessed with great memories of a lovely man.

We on here are a different kettle of fish and will battle on,all in our own way but each of us with the incredible support of other forum users. Hurdles are cleared, yawning chasms bridged and families fight to keep their loved ones in good spirits no matter what. I am truly grateful that when my own condition deteriorates I will have you good people to turn to for advice and comfort and to raise my spirits. I think we all know that apart from very few of us the battle will ultimately only have one inevitable ending but, by all the powers, that will only be after one hell of a scrap!!

Very best of luck to Steve on his ground breaking surgery in Heidelberg - inspirational to see him having a real chance of a great victory over PC.

Love and Peace

Mike