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Sarah


You never cease to amaze! My otherwise excellent GP obviously in the dark on Nano-knife and when I mentioned it just reminded me that I couldn't be cured and the tumour is inoperable - not to mention the metastasis to liver and lungs - very reassuring. I put it down to his mind closing down on hearing the word "surgery"! Back to the Professor when I see him in a couple of weeks time.


Very best of luck with your Mum's treatment - May the force be with you


Love and Peace


Mike

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Thanks Julia :-) Love my PCUK cheering squad!


Righteous fight it is. On second thoughts won't try doing Yoda :-S. Mike, sorry you had a frustrating GP convo. Sounds like our first consultants reaction when we went off piste to consult a London surgeon...."never heard of him"...."clutching at straws"...."must be realistic".


Couldn't remember the word for that until I re-read the PCUK briefing paper/call to arms for improvements needed in PC diagnosis and care. Nihilistic. Good word for a rubbish thing to be and think it would shock much of the general public we're using it to describe some medical professionals not the patients who're dealing with this horrific thing.


Ah well. Gonna keep doing our bit to poke em hard and often till they wake up and take notice of the lives behind the diagnoses.


May touch base after seeing new oncologist in London today. It's not til 6.30pm. Can see me giving mum a piggy back back to Liverpool Street at that time of night on day 6!


She did really well with judicious naps on days 1,2 and 3, including disconnecting her own pump and flushing her own line on Friday. Go her! Unfortunately her antifungal tablets did no good so old friend oral thrush is back making lips and throat sore and everything taste kak. Should have more Micronozole gel from GP by now to try get that sorted. Fatigue came on quickest yet and new achievement for the peripheral neuropathy is...wait for it...tingling bottom! Admittedly she had sat briefly on a cold hard chair in a cold hall, but not sure that qualifies as peripheral. Good job it's last cycle!


Love to all


Sarah

XXX

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Hi Sarah,

Hope it goes ok today. At least you will be getting to Liverpool St after the main commuter rush. We keep getting there about 6pm, which is a nightmare! Saw Paul's oncologist last week, and he thinks Paul will need something else once he has had the 12 Folfirinox, but doesn't want to make any plans until he gets to the end and reviews the scans. Just hoping whatever is decided we can cut down on our visits to London, if only to save all that money on train fares,

Love to your Mum,

Nikki

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Hi Sarah


Gosh, your Mum has out peripheral neuropathied Jonathan (if that's a word). He never had it on his bum! Maybe I ought to update my own thread about this but he suffered terribly still suffers) with this - folfironox ended early June. Last week his left leg got suddenly really painful and then numb. We had to go in for his Gemcap infusion on Thursday anyway so saw the Dr when there.


I thought it was a clot but they said not, that it was a probable side effect from the Oxaliplatin!! 5 months later? Anyhow, his foot has remined numb all weekend so it felt like he had a "club foot" and just couldn't walk any distance at all (we had to cancel our weekend away). He was terrified it would happen to his other which would effectively leave him cripled.


I was thinking of you and Nikki, both with loved ones having this treatment and wondering how to post this "development". Anyhow, PHEW, he said today he thinks it is feeling more normal again, he's been walking a bit and a visit to the GP today was also helpful as she thought it sounded like a tiny bit of "plaque" in his blood that had now unblocked which is caused by some other drug he is taking (a beta blocker, unrelated to cancer) and he is now on a low dose of asprin.


Well done your Mum on disconnecting and flushing her own line!


Hope all goes well today.


Cathy xx

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Good luck later Sarah. Knock em out! :D

Blimey your mum seems as ballsy as you, Ray could NEVER have managed a trip like that during chemo. Its a question of degrees I guess.


Cathy, update your own thread, then I can keep track lol.

Sorry to hear about Jonathan's numb foot. Why do they say, 'we think' or 'its probably' without following up to be sure. Jonathan could easily have had a scan to make sure it wasn't a DVT. The mind boggles.


Keep on keeping on people!


Love

Julia x

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What a shame Cathy you had to cancel your weekend away. Paul and I are often talking about various aches and pains he has, and saying how useful it would be if someone could tell us if they are down to the chemo, the surgery or the cancer, but no one ever knows really. At least I won't feel so guilty now if I give the families I visit vague answers!


Paul still only has slight neuropathy issues and that is literally on the way home from chemo, when he can't touch metal, and then for the next few days when he doesn't like ice in his drinks. It's so odd how it affects everyone differently. He was pretty rough coming home this time (on the tube and train, very scary). He was really sweaty and had pain all over. He insisted on carrying on home, I was identifying where the emergency call bell was! We are just waiting to hear from the hospital what their view is about this. I suspect he was having some sort of reaction, but that is odd when nothing was different and it was session 9. Of course in all likelihood we will get a vague response, it could be this, it could be that...

Nikki

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Hi All,


Good if totally knackering day yesterday - and that's from the one who wasn't day 6 of a 6th cycle of Folfirinox!


No more one upmanship on the peripheral neuropathy front to announce and I'll pass on your impressedness about the line flushing. Do bear in mind she's got a hickman line in her chest rather than a PICC. Makes the whole self-service thing MUCH easier. Nikki, what a scary thing for the pair of you. Prob best you didn't tug the emergency stop, with him being wobbly on his pins. You might have swapped his feeling terrible for a trip through the windscreen (a kind of extreme version of "I'll give you something to cry about"). That sounds a bit like the reaction to Irinetocan we were warned about if Atropine wasn't given or didn't work. A cholang..something reaction I think it's called, but with your background you're going to have a better idea than me. Hope you get to the bottom of that and there are no repeat performances.


In terms of Jonathan's leg - how horrid for you both! Don't hesitate about discussing stuff like that please! In fact it backed up a convo we had with her doc yesterday. Mum explained her PR tingling had got cumulatively worse through each cycle with last 2 being really bad days 1-4, then improving, but some symptoms still there at the end of the cycle now. The oncologist said that demostrates she's coming to the end of her tolerance for Oxaliplatin and into causing or about to cause permanent damage to peripheral nerves. A new and very influencial part of the decision to stop after 6 and do something else! Really hope he's properly on the mend now and it was something with a specific and transient root cause e.g. plaque not OX damage. Pass on mums regards to him please - she said club foot cancels out tingly bum any day!


Got another change to report. In brief (I know, ha ha). New Onc is lovely. Plans to do Capecitabine (or possibly GemCap) 5 days prior to Nanoknife then more after for a yet to be agreed time. Will be 2 weeks on and 1 off if Capecitabine tabs. That would have meant starting Cap tabs on day 9 of this last Folfirinox cycle (THIS FRIDAY!) to get enough on board in time for 18th Dec treatment. All have agreed that's cutting it too fine in terms of Mum getting strength back and logistically to get everything sorted. With Monday's CA19-9 test result showing another increase to 167 (from 90 at start of chemo) there's been a long chat about potential for progressing during this gap, but that's unknowable. Best guess with CA19-9 being so low it's significance is arguable, is that it should be fine. Doncha just love all the certainties we get with this disease!


The upshot is a reschedule to 8th Jan with chemo to start early new year. On the very up side, she could not be more pleased at the prospect of a treatment free chrimbo!


All other plans and next steps are on hold for now. New studies on effectiveness vs side effects (especially longer term side effects) of CRT have given food for thought on whether she wants to go that way at all. By the same token there's no specialist PC centre, including Heidelberg who'd consider resection without CRT first. A head do for another day.


Have been sad to see a big list of new posters either suffering themselves or with loved ones recently diagnosed and impressed and proud of the way my adopted PC family have gathered them all up and offered advice and care. Really chuffed to be part of this with you all. A club you never want to join. But when you're in everyone is so incredibly, brilliantly, supportive, well informed and kind.


Love to all


Sarah

XXX

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A chemo free Christmas, no wonder you mum is pleased, and no doubt you will spoil her Sarah. Hospital have confirmed it was a reaction but they seemed to think it was the bolus fluorouracil. They said it can have similar symptoms to having a heart attack! Now they tell me!. They are keeping him for longer next time, with the option of staying the night.


Good news the oncologist is lovely, and not pressing ahead for now makes sense. I bet you and your mum enjoyed the better quality of magazines you get in the waiting rooms in London!


Nikki

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Nikki, sorry to hear Paul had a bad reaction, can't have been pleasant feeling like that sitting on a bloomin' train! Staying overnight seems like a very sensible option!


Sarah, pleased your mum will have a treatment free Christmas, I'm sure it will a very special time this year. I just worry about you twiddling your thumbs, no chasing up, research to do lolol. I'm sure you'll cope ;-)


Drink plenty of wine!!!


Julia x

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The Medical Innovation Bill


Lord Saatchi's bill aims to free up medical professionals to offer newer less toxic/harmful cancer treatments as long as patients are fully involved in assessing the risks. It also aims to distinguish between reckless and responsible innovation and offer support to the latter to get approval. The latter being new genetic, immunological, non-radioactive surgical or other treatments that do not harm the immune system and body in the way that current mainstream chemo and radiotherapy does.


Lord Saatchi is trying to get the Medical Innovation Bill through parliament and is succeeding despite government attempts to block it.


That story is here. http://www.telegraph.co.uk/health/10390192/Lord-Saatchi-Government-decision-to-block-medical-innovation-bill-is-tragedy.html


I've posted other relevant info on the research and news stories forum here - http://forum.pancreaticcancer.org.uk/viewtopic.php?f=21&t=1276#p11157

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Just got my tickets for the do on the 20th March in London.


If anyone else is going let me know. Would be great for Mum and I to put faces to names. Know there may be hiccups actually getting there depending on what the old PC has in store for her, but still money well spent!


Sarah

XXX

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I couldn't switch off last night - did you notice!


This morning I'm tying up final loose ends of what's planned. Another note through from existing oncologist reiterating the strong recommendation from both him and our HPB surgeon that we don't insert this unproven treatment into our previously agreed treatment path. HOWEVER, he has now discussed with the nanoknife specialist and has been comforted this would not impact his ability to do chemoradiotherapy following, so while renewing the initial objection, the option to do nanoknife then progress via CRT to surgery (if that's still possible) is back on the table.


So I'm waiting for a rocket from my boss at work about my lack of progress on a few things. Have prepared my response..."Given i'm working 3 days a week at the moment I think our deliverables were overly ambitious, it's also worth noting that in my time off my Mum and I are busy pushing the boundaries of medical science, so some re-prioritising was necessary". Think it'll fly?!


Sarah

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Cheers ladies,


Less amazing and more knackered, spotty, slightly in need of a shower and with a bangy head right now, but those kind words help. Was an epic fail day today. Got to city today without kids packed lunches, purse, phone, pass to get into work and power supply for laptop. Can often manage to miss 2 or 3 of the above on way out of house, but today's been a doozy! Someone noted it was all stuff begining with P and did kindly enquire as to whether I'd remembered my pants...I had - YEY FOR ME!


Mum's doing good though. Planning kitchen refurb, walking dog, readying her self catering cottage for Visit England assessment (got her 4 stars again!), baking towers of mince pies and stocking freezer with meals to shove in oven over christmas, cutting holly for hers and taking it round to relatives/neighbours. Yes I've told her to take it easy and NO she doesn't pay attention, but she's relishing having appetite back, horrid thrush taste gone and she does nap when she needs to.


Think my ability to be guiltlessly idle on occasion developped as a defense mechanism!


Sarah

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  • 2 weeks later...

Thanks Hilary,


Haven't updated here for a record amount of time, but have been posting elsewhere. Nothing to say with Mum taking a treatment break, except I've spent a good 3-4 weeks not feeling quite right. Chesty cough virus, then somat else along with knackeredness, coated tongue and general bleugh. Picking up a bit now, but think stuff has just taken a toll.


I also, misguidedly started what others are calling a crusade at work. I posted about stress, my story of work grinding me down to the point I was signed off last chrimbo and a swathe of internal and external links for those struggling to cope this Christmas or anytime. Have copied the post to this thread http://forum.pancreaticcancer.org.uk/viewtopic.php?f=25&t=1227&p=11415#p11415 with sources of help and advice about stress, anxiety and depression in case it helps anyone else. It went a teeny wee bit viral as it appears more folk have been pushed to breaking point than let on elsewhere. Am doing what I can on that front to raise awareness.


Now have both fights on hold for a bit. Have written a big all singing all dancing christmas present hunt for the 3 kids (Mine 4 & 7 and my nephew 2). Well I didn't actually write it, Father Christmas did. 13 clues, 12 little stocking prezzies and the main prezzie they wrote to Father Christmas to ask for at the end. Love doing it, but it's shedloads of work.


Now to stop being selfish, my Mum is doing fab. Tingly bum is now a distant memory and only a tinge of tingliness in fingers when v. cold. Platlets gave some pause for thought zipping down to 70, but not other accomanying blood worries or symptoms. BP which has been a worry is still spiking V.High, but doc says average BP doesn't need medication, but will keep an eye. Fatigue continues, but never know if down to continued recovery from Chemo or her little dark passenger so she enjoys the indulgence of naps and doesn't think about it. Still no tumour related pain - FABULOUS! No noticable weight loss and appetite after a dip days 12,13,14 of final cycle has started to get back to normal.


Overall bloody marvellous and minimal jumpiness at doing nowt under control. My sis, bro in law and nephew being her is fab and can't wait to see the kids faces Chrimbo morning.


Lots and lots and lots of hugs to all of you and yours and wishing everyone as happy, peaceful and joyful a Christmas as possible.


Sarah

XXX

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Hi Sarah


That all sounds great!! Well done!!!


Sorry, I've missed a few of your earlier posts but you must have been delighted finally to get your own oncologist on board with concept of nano knife. I have to say I'm impressed they discussed with nanoknife surgeon but well done you for enabling that to happen.


You deserve a good rest yourself now. Advocating for someone when you yourself are working is exhausting. I speak from experience and I don't have a family to contend with, remember packed lunches for etc.... Everything crossed for your Mum going forwards.


Have a most fabulous Christmas and New Year


Cathy xxxxx

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  • 2 weeks later...

Hi all and thanks for the kind words Cathy. We did all have a lovely Christmas. 3 kids in the house under 8 and most of the time they played nicely and made it a memorable few days.


Now been to London for the pre-op assessment. Posted on Mark's thread to say we'd sorted the chemo to go with the nanoknife, but there's been a bit of a hitch getting it signed off by insurers. Overall bit of a communications breakdown. Looks like Mark's creative solution with getting it prescribed by his GP then ordered via the internet made sense after all! Will have to watch this space for that one.


Looong trip in rain and wind for a 1hr appointment, but does reduce time in hospital needed on the day. Looks like Mark might be going first as Mum's procedure is 2.30pm.


One laugh today. The good prof had written the clinical letter to the insurers in a bit of a hurry, so had her diagnosis down as "borderline respectable"! We both agreed that was pretty much fair.


Have been lax picking up on other posts so do hope you all are doing as well as poss and will catch up again soon.


Sarah

XX

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Good luck and best wishes to you and your mum for monday. Same applies tp Mark of course and this will be a big day for all of us........all eyes will be on you both.


Steve

X

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Thank you Steve, I've now started the Capecitabine so feel the countdowns started.


Sarah I should perhaps just clarify that the drugs ordered over the internet was via our leading retail pharmacy. I had assumed your Mum will be going before me, I remember being told there were two people already listed.

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Good Luck to both Mark ans Sarah's Mum! Hope both procedures go really well and achieve the required outcomes. Like the cat who's just eaten a piece of cheese I'll be waiting with baited breath!! More evidence to put before my Professor!


Love and Peace


Mike

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Ahh thanks guys (loving the cheesy breath bit Mike :-) and thanks for the clarification Mark, didn't think you'd gone black market, but good to know nonetheless. I'll pass all your best wishes on to Mum. She's getting some periodic niggling upper abdo pain at the moment and you can guess what she thinks it is. Keep trying to reassure her she's got the right next thing on the list to try if it is the wee (insert preferred term here) getting up to no good.

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