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Steve, I am glad you are feeling better, you are amazing having gone through everything you have. Try and enjoy your break as best you can. The fact that you have carried on working during all this is awe inspiring to me. I gave up work as soon as I started chemo. But I am in the fortunate position of having income protection for a while so the decision was not that hard, I do wish sometimes I was still at work as it might distract me more from my bad thoughts.

Jane C

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Hi Steve,


When do you get your results Steve? Really really hope that it has improved considerably off your liver.

When do they next test your CA199 marker?


Look after yourself and please don't over do it. Take advantage of the break and rest.


Leila xx

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Slewis7313

The MRI is really a reference/starting point to see how the Folfirinox performs in the future, though it may give us more of a clue as to the extent of the spread (the PET scan identified 2 areas of activity). We will run through the results and review the CA19 before the 4th cycle, so around 19th (ish) of June. Nearly forgot, I am also to have a barium X-Ray in the next week or so to be sure the gastric problems are not related to any sort of blockage, though I have been eating large meals for 2 days without any problems.


Steve

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Hi Steve, glad to hear you seem to have got on top of things and high five to Margaret for the blending trick.


I do think you will probably tolerate a little better next time round. Also a little time off work whilst on the Fox can only be a good thing, so take full advantage.


Very best wishes

Julia x

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Time to tempt providence again! I am now on Day 4 of the current (3rd) cycle and other than a slight increase in neoropathy, have so far had no side effects at all........fingers crossed yet again! I now actually feel better than I have for several months, so hopefully 'The Fox' is starting to do it's stuff. All good timing with my 60th Birthday coming up in 10 days.


Steve

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I have not posted for a while but I really hope you enjoy your 60th birthday and well done for keeping your chin up during all the ups and downs of this illness you really are an inspiration for everyone fighting this. Kind regards Lyn x

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Great news! I just knew it was going to get better for you! I'm wishing you HAPPY BIRTHDAY now in case I'm not around or forget - its my age ;). Have a fab time!


Julia x

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I need some advice regarding a minor hiccup. I ran out of Metaclopramide (anti sickness) medication yesterday, knew it was coming, but did not push for more as I am seeing my Oncologist this Thursday. I felt things were going really well and that this far into the cycle, I probably did not need it. Well, surprise, surprise I was sick twice in the last 24 hours! Based on your collective experiences, is anti sickness medication taken continuously throughout the cycles of Folfirinox? I have started taking Domperidone for now (left over from last year, but still in date). I have asked my Support Nurse for advice, but would appreciate your thoughts on the subject as well!


Thanks!


Steve

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Just saying hello Steve, I have no advice on this one, after the first cycle sickness wasn't a problem for Ray, though he did feel a bit nauseous at times. Come to think of it, I recall the nurses at the chemo centre saying just take it when you need it!


Sorry not much help!


Julia x

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Hi Steve


We had both anti sickness pills and steroids to help with sickness. I'm afraid I won't know until I get homne how much (the amounts are still on a post it note in that cupboard) but it was no more than 3 or 4 days after treatment although we did experiment with the streoids for longer (to stop the fatigue dip rather than reasons of sickness).


Cathy xx

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Jim was advised to take his just whenever he felt sick during the folfirinox. He finds he only needs a couple the first day and that's it. He's never actually been sick at all.

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Thanks folks.... I am hoping this is just a glitch and that things will be a little more normal moving forward. I am seeing my Oncologist on Thursday who I am sure will have some ideas / suggestions.



Steve

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Steve,


Am now home. Initially Jonathan was told to take steroids for 3 days, 2 after b/fast and 2 after lunch and anti sickness 2 before b/fast, 2 before lunch and 2 before tea for 3 - 5 days. I imagine you would need to experiment with them. Jonathan never needed to for nausea as he, fortunately, never had that.


Best of luck


Cathy xx

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Hi Steve

When Terry was having gemcitabine and capecitabine he took a sickness tablet with every dose of tablets. This was prescribed by his oncologist and he was never ever sick. Hope this helps and good luck. Lyn x

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Things have now settled down and I am feeling fine. Not sure what was going on earlier in the week, but we will see how the next cycle goes.


I saw my Oncologist this morning and she confirmed the MRI Scan showed up 12 small spots in my liver. This was not unexpected, so we shall see what 'The Fox' does to them over the coming months. Unbeknown to me, they checked my CA-19 on 6th June (after 2 cycles) and my Marker has dropped from 2900 to 2100! That was an unexpected and most welcome piece of news. Now looking forward to my 60th Birthday celebrations even more this weekend.......and the sun is shining!


Hope you all have as good a weekend as I intend to.


Take care


Steve

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Pleased things are going good for you Steve. The tumour marker coming down is great news. Have a great 60th and I hope you are able to eat and drink a lot of yummy things.


Leila xx

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Hi there Steve HAPPY 60 TH BIRTHDAY!!!! to you, hope you and the family have a lovely weekend, and the sun keeps shining down on you all, we will be thinking of you, glad you are feeling better too. Great news the tumour markers are down, the furry fox is certainly not pleasant! but it does seem to do a good job so fingers crossed it continues to do its best.

As I type Trevor is out gardening again, been doing 8 hours outside a day digging painting and planting, at the moment he is constructing a fence so he is sawing away, feels great he says, long may it continue, take care sandrax

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