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Re: Folfirinox DONE - Nanoknife New Year

Postby Bee » Sat Jan 04, 2014 12:34 am

Good luck all xx
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Re: Folfirinox DONE - Nanoknife New Year

Postby Cathy » Sat Jan 04, 2014 9:16 am

Yes. Good luck. Can't wait to hear from you.

Cathy
Xxx
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Re: Folfirinox DONE - Nanoknife New Year

Postby Charney22 » Sat Jan 04, 2014 9:36 am

Good luck both of you for the 8th xx
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Re: Folfirinox DONE - Nanoknife New Year

Postby EmmaR » Sat Jan 04, 2014 10:49 am

Good luck and Best Wishes to you both and may the news after be good ! xx
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Re: Folfirinox DONE - Nanoknife New Year

Postby InfoForMum » Sat Jan 04, 2014 9:57 pm

Thanks guys again. I'm feeling pretty low tonight. Some nasty bug and no capecitabine prescription and no contact from the oncologist or his secretary. Posted on Mark's last thread it was great to feel like I could take the foot off the gas, but apparently not. Not now sure of the implications of this for efficacy of treatment or need to delay it and frankly I've had enough. Feel like curling in a ball tonight and hiding under duvet. Would do if I didn't need to keep Mum calm. Small, small, small hiccups compared to most of what folk are dealing with, but feel stupid having let guard down and too full of cold to make folks lives as hard as I'd like to. Sorry for the rant. As I said, not very considerate given we've got what we want on the horizon now and she's still so well. Prob shouldn't have posted. S
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Re: Folfirinox DONE - Nanoknife New Year

Postby nikkis » Sat Jan 04, 2014 10:04 pm

You rant away Sarah, hope it has helped. You enjoyed your foot of the gas moment, so take care of yourself for the rest of the weekend and put it down to the floor on Monday,

Love,
Nikki
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Re: Folfirinox DONE - Nanoknife New Year

Postby J_T » Sat Jan 04, 2014 10:09 pm

of course you should Sarah. I better you're proper p'eed off! Just reading about all you've done tires me out. It shouldn't have to be like that. Like treading through treacle sometimes and you wonder if anyone is actually on your side and striving for a patient's survival.

My eyes have been opened to some sorry attitudes to this disease. It seems that when all hope has gone, they can't do enough for you. If only the same attitude applied to prevention and cure by EVERYONE not just a few. That's what it feels like anyway.

KBO Sarah xxx
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Re: Folfirinox DONE - Nanoknife New Year

Postby cestrian » Sun Jan 05, 2014 8:28 am

Bless you Sarah, that's what your forum family is here for!! Rant away as it just makes things that little bit easier when you feel you've got someone who cares that you can share your troubles with. Virtual hugs and keep on top of your cold - just what you needed I'm sure!!

Love and Peace

Mike xx
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Re: Folfirinox DONE - Nanoknife New Year

Postby MSH » Sun Jan 05, 2014 10:47 am

As I understand it, and this is somewhat hazy, IRE or irreversible electroporation destroys the tissue between the probes. There is at the margin an area of reversible electroporation which is particularly susceptible to chemotherapy, hence the capecitabine. I suspect that this is more theoretical and starting five days before the procedure is pretty arbitrary, as long as tissue levels are reasonable on the day it should be effective.

[Line removed by Moderator. This post has been edited by the moderators as some of the content was not in line with the forum guidelines. The post author will be contacted with an explanation]

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Re: Folfirinox DONE - Nanoknife New Year

Postby InfoForMum » Sun Jan 05, 2014 12:04 pm

All you're so kind. Especially you Mark with such a practical suggestion. We're in East Anglia so that won't fly, but now you've reminded me of the research I'm still hopefull we'll have some on board before the op. As you said the peripheral, reversable cell damage to an area about 2cm diameter around the irreversably damaged area theoretically makes that area more susceptible to chemo and prof estimates that cell damage takes about 10hrs to heal. Amazing what I have stuffed in my head!

Will, as Nikki suggests, get over this bug (feeling a tad better today) then pick it up tomorrow. Strongly worded mails waiting for all concerned to see on Monday to be followed up by my calls.

In fact, I've got my own scan on Monday. Signed up for one of those Lifescan jobs from Bupa. Self funding, so there goes spending money for a few months, but helps peace of mind on off chance there's anything hereditary going on.

Thanks again for the leg up guys.

Sarah
XXX
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Re: Folfirinox DONE - Nanoknife New Year

Postby InfoForMum » Mon Jan 06, 2014 12:23 pm

2 kids fully clothed off to 1st day back at school (minus one rucksack and 1 pair school shoes!), 1 insurance company with rocket sent up it, 1 procedure and overnight stay approved by insurers, 1 mother pleased by that, but still stressed about missing chemo, 1 NHS secretary cried/shouted at 1 private secretary finally picked up the phone and defused the me-bomb by promising results, 1 lost blackberry reported, 1 new blackberry being delivered tomorrow, 1 lifescan + bloods done, 1 tea made with cake and almost with a slug of whisky on the side. Fingers crossed some chemo appears soon!

S
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Re: Folfirinox DONE - Nanoknife New Year

Postby nikkis » Mon Jan 06, 2014 1:42 pm

And all achieved by lunchtime, you are a human dynamo Sarah!
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Re: Folfirinox DONE - Nanoknife New Year

Postby InfoForMum » Mon Jan 06, 2014 6:47 pm

lol, kinda - slept all afternoon with a tissue under my nose, but all on for tomorrow. Still no sign of chemo, but as per Mark's very balanced view, there's no hard and fast rules about length of chemo in advance. Not happy but pragmatic.

I know you've had your own fight and was so pleased your oncologist admitted he was falible and is on board with the abraxane plan. Let me know how you're both going with that!

Sarah

XX
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Re: Folfirinox DONE - Nanoknife New Year

Postby InfoForMum » Tue Jan 07, 2014 9:49 pm

So, installed in hotel, Capecitabine and anti-emetic taken after a rather nice Italian meal, B&B is pretty good at £80 per room in W2 and surprisingly chilled mum. Unlike me this morning chasing everyone around until prescription written and delivered to the hospital as no-one could get hold of the home healthcare company supposed to deliver chemo.

All's well that ends well for the run up to this (even in room 202 and 2 is my lucky number - how's that for a hard nosed logic fiend :-). Will keep you posted. First job tomorrow is to distract Mum from the fact she's terrified of having her first GA. Far more worried about that than anything else at the mo!

Take care all,

Sarah
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Re: Folfirinox DONE - Nanoknife New Year

Postby Slewis7313 » Tue Jan 07, 2014 10:20 pm

Best wishes and good luck to you and your Mother Sarah.......bring on the pre-med! (Same sentiments to Mark of course).

Steve
X
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