A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Starting a long long journey

Postby J_T » Fri Oct 04, 2013 5:53 pm

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
Posts: 14
Joined: Wed Oct 02, 2013 11:41 am

Re: Starting a long long journey

Postby Winkle » Sun Oct 27, 2013 9:45 pm

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Starting a long long journey

Postby Cathy » Mon Oct 28, 2013 2:34 am

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/vi ... t=30#p7828

http://forum.pancreaticcancer.org.uk/vi ... t=15#p7983

Good luck.

Cathy xx

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Mon Oct 28, 2013 12:42 pm

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
Posts: 14
Joined: Wed Oct 02, 2013 11:41 am

Re: Starting a long long journey

Postby Winkle » Mon Oct 28, 2013 10:24 pm

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 Christies 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 Christies 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
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Starting a long long journey

Postby InfoForMum » Mon Oct 28, 2013 11:28 pm

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/vi ... =28&t=1168

Sarah
XX

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Tue Oct 29, 2013 10:07 am

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
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Starting a long long journey

Postby marie souter » Tue Oct 29, 2013 10:39 am

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
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Tue Oct 29, 2013 1:03 pm

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Starting a long long journey

Postby cestrian » Tue Oct 29, 2013 1:25 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Starting a long long journey

Postby nikkis » Tue Oct 29, 2013 3:21 pm

Hi All,
Just wanted to add my bit about Folforinox. My lovely husband Paul has just had cycle 6 0f 12. He has had surgery, and it is normally not given post op,. as I understand it is considered too hard to tolerate. However as he has some tumour they didn't manage to get out, and it had spread to his lymph glands, his oncologist has gone for it, and actually after every cycle he has more better days. So for those who are just starting on it, it might not be as bad as you think.

Today is his 50th birthday, which has unfortunately coincided with day 5, which tends to be his worse day, but we shall just have to celebrate at the end of the week instead. They did offer to delay the chemo until after his big day, but we just wanted to push on. Paul is determined this thing won't defeat him and that there will be lots more birthdays! I have read him some of your posts David, and your positivity sums up how he feels,
Nikki

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Starting a long long journey

Postby Cathy » Tue Oct 29, 2013 3:28 pm

Hi Nikki

Day 5 was Jonathan's worst day too. He tried experimenting with steroids whcih helped with the dip but then had side effects as well (hey ho).

But a HUGE Happy Birthday to Paul on the big 5 - 0! I hope that you manage to have a lovely celebration.

Cathy xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Starting a long long journey

Postby nikkis » Tue Oct 29, 2013 3:39 pm

Thanks Cathy,
We had planned to celebrate it on a beach somewhere, but your goals change, and we are just happy he is not celebrating from a hospital bed!

Nikki

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Starting a long long journey

Postby davidandsam » Tue Oct 29, 2013 4:28 pm

HI Nicki

Happy 50th to Paul from me (it was mine in April) and coincedentaly it is also my day 5 day ! I have to say it is one of the darker ones in the cycle. I have just got off the phone to my other half Sam who has reminded me that day 5 is "Chemo Brain Mush day" tomorrow however you will face a new challenge ! physically you are not as strong as later on in te cycle but mentally I am to say the very least " distracted" Too many what if's too many vaiables but then "WALLOP" you get a post from you guys (thanks Nicki and Mike) and it brings you home with your virtual family and you realise that Sam the font of all things positive is absolutely right.

I plan to finish work a bit early get home to my family and enjoy as best as I can being with them !

Thanks as ever for the focus guys !

onwards and forwards it's nearly the 30th ! and day 6 will most certailnly be better than day 5 !

David

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Starting a long long journey

Postby nikkis » Tue Oct 29, 2013 4:50 pm

My goodness David,
You are at work on the dreaded day 5, you are a super trouper. What a firm brain you must have had to start with to be able to work through the mush now!
Paul has spent the day in bed, and something strange possessed me to buy him a loud bell for a jokey birthday present (that might be disappearing before the next cycle).
Tomorrow will be day 6 and a little better, and by day 7, anything is possible!

Take care,
Nikki