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So far so good!


Slewis7313
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Someone up there wants you to get some sun on your back! Great news Steve, and with Cathy giving you the PICC line cover, you can spend all day in the sea/pool.

Hope you both have a great holiday.


xx

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All change again! The nurse responsible for fitting the PICC line is uncomfortable about fitting it directly before my holiday as there is a small risk of infection which has the potential to ruin the trip. We have therefore agreed that I get the PICC line the day after we return (7th), with chemo starting on Monday 12th. This works for us, only introduces a further small delay and they are all keen for me to have a break before meeting 'The Fox'.


We still had a meeting with the Oncologist to sign the papers and be briefed on the side effects. It was pretty upbeat and quite interesting as we are still unsure why it appears not to have gone secondary yet. She has faxed the referral for a private PET scan and whilst she could not have done this through the NHS, she seems keen to see the results.


Just need to pack the cases now!


Steve

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All sounding good Steve but what a shame you missed the meeting today!


Will be nice to get a good holiday without the PICC in your arm! Hope you all have a fabulous time. Keep well.


Julia x

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All the dates are now in the diary and I get back from Cyprus on 5th May, have a PET scan on 6th, followed by the PICC line fitting on 7th and first chemo session on 12th. I will no doubt have the full briefing again on the preparations and side effects, but I'll pick your collective brains on one area that is a little unclear. Before my very first chemo (GemCap) session last year, I had conjured up an image of a treatment room full of people being sick through the whole day. As a result, I fasted as I 'knew' it would only make my sickness worse. It was of course totally different, with a room full of very jovial patients all in the same boat, being plied with tea and sandwiches by the Red Cross ladies most of the day. I likewise had no sickness issues whilst at the chemo unit.


My 10 months of being a spectator are over, so time to prepare for 'The Fox'. My first question is; are there any considerations regarding what and how much I can eat on Folfirinox treatment days? I know of the infamous 'day 5', but would appreciate anything you can give me. GemCap was always asministered in less than 1 hour, so a long stint at the chemo centre will be a new experience for me.


I feel pretty good still, but the fatigue and niggly stomach are creeping back in, so it is time for action.


Thanks in advance for the support I know you will give me during treatment.


Steve

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Hi Steve,

Speaking on behalf of Trevor, as I do most of the time anyway lol but with his full approval I should add.

Trevor just had his porridge as normal for breakfast, then as you say you are plied with tea coffee biscuits and sandwiches at the unit, sometimes we would eat lunch in the cafe at the unit, the only "funny feeling" Trevor got was when they gave him the first infusion as he gets gripe like pains in his tummy, they do give an injection but he usually still gets them for about 10 minutes.

He finds he can't drink cold drinks when he has finished the treatment, for about 48 hours, we find run a glass of cold water and just add a drop of hot water out the kettle and then its ok. after that he can drink cold water he just can't pick up the cold glass due to his tingly fingers so he wears gloves. I still find it amusing him sat at the breakfast table in his dressing gown and gloves. and sometimes even his hat !!!!

You are lucky with your timing, as the warmer weather is hopefully on the way, just don't plan on Ice cream for tea.

We find it amazing like you that the majority of the people on treatment look so well and

as you meet the same people every time you strike up some nice friendships along the way.

Hope you have a really great holiday and continue to feel well whilst you are away, its probably a good idea to wait for your PIC, its one less thing to worry about, take care sandrax

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Thanks Sandra, that is just the sort of information I was after. We were in M&S yesterday buying holiday shirts and gloves....strange combination!!


Steve

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My dad has said the best care he has ever got with this, is when he has chemo. He says the nurses can't do enough for him. He can watch what he likes on tv. They fetch him sandwiches and newspapers. They forever ask him how he is feeling and if he needs anything. Every time he goes, he has a long day. He's there from 10am until 5pm each time. Apart from last time and he was there until 8pm! Thankfully, he has never had any kind of issue while receiving chemo or after chemo.


Good luck Steve and hope you both have a great holiday.


xx

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Yes make sure you get an atropine injection, Ray got all sweaty and stomach cramps and they slowed down the infusion. Slowing down can make it easier to tolerate. He never really suffered from tinglyness so its not a given. He said his throat felt a wee bit peculiar but nothing to complain about, just a funny feeling for a short time. As I've said quite a few times ;) Fatigue was the main bugbear for him. He started off post Fox treatment taking 4 steroids for 3 days but on advice from Cathy he asked for and got more to take over more days on a decreasing dose which did seem to help a bit.


HTH


Have a fab holiday


Julia x

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Hi Steve


As for food, Jonathan ate as normal and often stopped off in the pub on the way home for a pint! It really varies from person to person I think.


As Julia said, I'm sure you will be offered an atropine injection... These can be stingy but better into the tummy than an arm (made a huge difference to Jonathan).


Have a super holiday. I didn't see your message til after the meeting so took the Picc line cover with me but will hang onto it for you if you would still like it??


Loads of love


Cathy xxx

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Thanks again folks. Cathy, I went to the web site and ordered a cover as I thought I needed it urgently. A handy bit of gear! I just need to check out the pubs between the chemo unit and home, then I'm good to go!


Steve


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Hi Steve


Hope you had a great holiday. My husband had 22 cycles of Folfirinox, so I have a few tips for you. As everyone is different it is hard to predict the side effects you will or hopefully won't have. My husband suffered from sickness from the first treatment. He was then put on Emend and this worked wonders. I don't think he would have been able to carry on without it. We also developed a trick for the tummy cramps. About an hour before the irrotecan he would have 2 buscopan tablets and then 2 later in the evening. He still had the atropine injection,but the tablets gave longer cover.

He also had constipation, so he started dolcusate the night before treatment and for the next 4 days. He also had a laxative pill on the night of treatment and the next. Prevention was the key here. However I have heard some go the other way and need Immodium. Its so individual.

His oncologist (a wonderful man) also decided that a dialy injection of Celexine would provide protection from the increased risk of clots from both chemo and the cancer. I did these for him most of the time, but he did do them himself if needed.

I would also recommend regular blood sugar tests, my husband became diabetic 2 years after his wipple. The doctors believed it may have due to the chemo, he had had about 14 sessions of the Fox at the time. Not to mention the adjuvant Gemcitabine 18 months before. His cancer was stable in the pancreas area and peritoneum and reducing in the liver. So he carried on.

He was always very tired the evening of the treatment, he would begin to feel better the next morning and would be back to normal the day after the portable chemo (we called it Bernard) was removed.

We went on holidays during the treatment, I was taught how to flush his line. Nerve racking at first, but easy. He had the swimming picc line cover which was brilliant.


I hope all goes well with your first treatment.


Sue H

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Slewis7313

Many thanks Sue, some really useful information. We are still in Cyprus and having a good time in preparation for the onslought. I'm still on daily Clexane as my Oncologist is uncomfortable about stopping it and the good old diarrhea persists (since the failed Whipples), so who knows what effect adding 'the Fox' to these will have.....we'll soon find out.


Thanks again to all you lovely folk out there, you certainly make this much less scarey! Where's that Ouzo?


Steve

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Slewis7313

So, Cyprus seems like a distant memory but we had a great time and even managed some paragliding!

I had my PET scan yesterday (on the way home from the airport). The PICC line was fitted this morning and they apparently now like to avoid the elbow joint area, so the line was fitted on the inside of my upper left arm (as I am right handed) pretty much midway between the elbow and shoulder. It is quite unobtrusive and hidden even with a short sleeve shirt. Watching it being guided in on the ultra-sound monitor was really interesting, though it took 2 attempts as the veins are apparently rather small.


Chemo (Folfirinox) starts on Monday and I'll keep you all posted.


Steve

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Pleased you had a good holiday, now it's time for business!


My dads PICC line is there and he gets on ok with it. Though the district nurses are pretty poor and panic when it comes to flushing it!


x

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That's where Jonathan's was too. He used to wear a tubular bandage on it, it made him feel more secure.


So glad to hear you had such a nice holiday.


All the very best for Monday


Cathy xx

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