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Great news about your mum Sarah, you must be feeling very positive about future treatments. Great work on your part!


Cathy, :( So sorry you have to contact PALs, it seems quite a few of us will be going down that route - not good at all. Glad to hear that Jonathan is generally well though. Hope he's still managing to enjoy his pint!


Love

Julia x


(is anyone else's 'Reply to Post' as sluggish as mine?

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Hiya Julia


YES! Very sluggish... Thought it might be my wifi..


Jonathan has been looking forward to the weekend, pub tomorrow and curry Saturday all being well. Not sure about a curry with his current tummy troubles but its what he wants and as he reminds me, ad nauseum, "they said to eat and drink whatever I want".


He's not been sooo great today but hopefully will perk up again tomorrow. In fact, he seems perkier even as I write now.


Tomorrow my PALs campaign starts proper.


Hope you are doing ok?


Loads of love


Cathy xxx

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I hate curry lol. All power to Jonathan's elbow though! :D


I'm not bad, thanks Cathy. Our Macmillan nurse came to see me and Kate today. We had a long chat, and she is so good and was really helpful with lots of stuff. We can ring her anytime we like. Nice to know that. x

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Me three-sluggish replying that is. Julia, glad to hear you're getting some support to do all the re-going over this is likely to take. I found having a medically experienced friend to work through stuff that happened to my Dad made a big difference. Wasn't so much the emotions as ironing out any "what if"s and "did I do enough/the right thing"s, carefully exposing the stuff I felt most raw about, then poking at it until I felt less raw and could safely tuck it away in my head somewhere it wouldn't ambush me.


Ramble ramble ramble. Sorry hon, I do run off at the mouth. Like I said at the start, glad you're getting some good support.


Thank you Nikki for your support too. I noticed you posted on Arlenes threat [meant thread, but think that's an appropriately freudian slip!] too about some of the hardships suffered. Rest assured if I can help in any way I will.


And Cathy I have to say, and Jonathan mustn't take offence, that that post sooo reminded me of my daughter. Our convo - no you can't have another sweet. It's one halloween sweet a day. Her - Well Charlottes Mum said it doesn't do any harm once in a while and she can have as many as she likes....hmmmmm. Back in our PC reality it's got to be the best excuse to just do anything that makes you feel good hasn't it and besides I don't think the "my house my rules" chat followed by "if you make a fuss it's going to be the naughty corner" would work for you ;-)


Love to all


Sarah

XXX

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Ha ha ha....


He's a big b*gger - cant see him fitting in a corner, even if I managed to somehow drag him there. Entice him with a fag maybe (ahem!).


That is really great about the nurse Julia, even if you decide you don't need that help it is sooo good to know it is there for you and Kate.


Love you ladies


Cathy xxx

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Dear Sarah,

Paul was first seen at a certain hospital that is being investigated at the moment re their cancer services, so actually hoping this means that if we get in touch now, SOMEONE WILL LISTEN! Of course should be writing the letter now, rather than just talking about it! Will let you know our progress.

Take care all, and happy complaining,

Nikki

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Post Reply function won't work at all now on my Kindle and so slow even on my superfast laptop!! Proves the old adage "if it ain't broke don't fix it"!!


Good luck to all of you carers on here with getting the proper support that you need. Apart from a touch of "Montezuma's revenge" that I've been trying to blame on my Radioactive Mugga scan and litre of gunge for my CT scan I'm still doing fine and have put on another pound this last week despite the squitters so all very good! (Sadly it seems likely it was the large scotch I had on Sunday that has upset my digestion but the Loperamide has pretty well done the trick!)


Apart from seeing my Clinical Trial team I currently have no other medical intervention apart from routine reviews with my GP, really to keep him in the loop as to my progress.


Got my picture on the "Purple P" site as I'm sure others may have done. Getting little sympathy as I look disgustingly healthy for someone with a terminal illness! Hey Ho have to get the violin out!!


Love and Peace


Mike

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Cathy we all laughed our heads off at image of Jonathan being lured or more amusingly dragged to the naughty corner :-) Surely worth the threat just for chucks ;-)


Mike, feeling you with the healthy looking vibe - where is this photo? Want to put a face to the kindness and sense of humour! Mum keeps getting "you look well!". Probably because the poster picture for chemo is no hair, and looking very unwell and Mum, on the end of her second weeks of cycle is far from that. Helps that she's actually gaining weight now too! We're so lucky.


Missed one chemo brain incident that may amuse. Mum was multitasking one morning, prepping the instant porridge and feeding the dog. All went swimmingly until she put the dogs bowl down then turned to pick up her porridge. Beautifully done except for the handful of cut up liver slowly sinking in :-S She's missing out on some protein, but did decide that was a step too far.


Wanted to share a chuckle, but also pretty poleaxed by Sue's news. Haven't found the words to post yet. I know how many good people are lost to this, but it feels like an avalanche of bereavement at the moment. My heart hurts for her and her boys.


Love to all


Sarah

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Hi All,


Been uncharacteristically quiet for a couple of days, mainly as started back to work this week and my sis has been down visiting mum. Has been lovely having her here.


I've also been researching nanoknife like a demon. Specialist reviewed her latest scans today and wants us in for a consult. Great news. Rarely if ever done as a pre-surgery option. Normally post surgery for recurrence or as a palliative option, but seems he is suggesting an attempt between chemo and surgery.


My guts are saying that's a good idea. Not ignorant of the risks of any procedure, but in all the patient experience I've found the vast majority of complications linked to the procedure have been associated with administration during surgery either for whipple or gastric/biliary bypass. The other issues raised were reoccurrance, but we all know that's always a risk, especially with vessel involvement.


The kicker is that I sought an opinion both from her local oncologist (the guy due to start radiotherapy in Jan) and her surgeon and both think it's a bad idea. Neither want to have something untried derail the current plan for radiation and surgery. I totally take that on board, but patient experience in the states is different and at least 3 people were in a similar situation with local hospitals inexperienced in nanoknife saying DON'T. Each went ahead and each went on to successful whipple and coincidently all are recurrence free at 12 months, 2 years and 3 years respectively.


3 folk doesn't make an arguement to go against advice of much liked and trusted professionals, but you only get one shot at kicking this buggers ass and I'm struggling to separate the caution about newness and "protocol paralysis" from the medical evidence.


Mum has decided to go for the nanoknife consult independently and reserve judgement until we've spoken to the main man. May then have to have the very difficult convo with current guys to see if they can have minds changed and if they'll kick us off their lists if we go against their advice. The other biggie is the insurers. Without a proper referral we're unlikely to get cover. Without it's about £14,000 for consult and surgery.


Still in a very, very fortunate position, but not resting if there's something better can be done.


Very keen to find out how David got on with his nanoknife treatment too.


In case anyone is interested here's a link to a US forum - Cancer Compass, with a long involved nanoknife thread with lots of posts about research and trial results for IRE and other chemo/immunological treatment options. PhilJax is a prolific and informative poster, but is notably forceful in his support of nanoknife. In between are balancing patient perspectives - all 24 pages of it!


http://www.cancercompass.com/message-board/message/all,63127,0.htm


Take care all


Sarah

XXX

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Hi Sarah


Well, what a dilemma!!


It sounds as if you have a very sensible plan however and maybe talk through more with your local team what their actual concerns are afterwards (if you haven't already of course).


Keep us updated


Cathy xx

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Hi Sarah, you are a demon researcher! If you do decide to go ahead Would an option be if your mum's current docs don't agree with using the nano knife pre surgery, to transfer her care to someone that nano knife doc recommends? That might mean going private for all her care, and probably having to go more regularly to London but it would mean she would then be covered by her insurance and therefore not have to fork out?

Nikki

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Sorry all the site's been so slow I've only been dipping in and out when possible but it now seems to have been fixed! I'll get the link to Purple P from my daughter and post it on here as soon as I can!!


Love and Peace


Mike

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Ladies, I love you all. Between you and my Mum I've kept faith in my research and we're off to see the nanoknife doc in London on Wednesday next week. Both objections from current docs are based on lack of evidence linked to this in large trials and the fact that neo nanoknife for operable tumours isnt protocol in their centres. My concern that Mum would be totally put off by those objections was unfounded. She's been increadibly logical and measured in considering this and my favourite comment was "well if no-one bloody tries it they'll never know if it's a good option will they!". She never ceases to impress me.


Nikkis, you took the thought out of our head. I said to Mum that the only question she needs to ask if she wants to go for this is "if I do this against your recommendations does that mean you will refuse to treat me afterwards?" and if the answer is yes Mum said she'll ask the nanoknife doc and I'll ask the wonderful nurses here who to talk to next.


It probably makes no sense switching between reading reams of medical publications and journals to understand the full technical SP about things, then talking the next moment about trusting my gut. But as a combination it seems to have worked so far. I've been so, so careful to present a balanced view to Mum, but our partnership wouldn't have worked without her intelligence, strength, bravery, positivity and humour.


And Mike - do get on with that link. Looking forward to it!


Love and hugs


Sarah

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Oooh that would be great. Another iron I could have in the fire if things go bits up with the current guys. Thanks Nikki! Moderators will have my email if you ask.


S

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Something I've finally managed to put into words:


When rules, policies, protocols and procedures are for the good of the majority they should be upheld UNLESS there is no tolerance for individual exceptions. Exceptions are the seeds of evolution. Exceptions are how individuals carve a better future for the majority. Standing alone is hard and people will try to force you back to the pre-approved path, but stand strong, balance your risks and as long as you do no harm to others, fight for yourself. Your risk may benefit many others who follow. Your apathy will harm no-one but you.

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Talking to myself at home while struggling to sleep, so thought what the heck, I'll come on here and talk to you guys. Mum's having a bad minute or two. The nanoknife option and refusal of implicitly trusted consultants to support it as a potential addition to treatment has thrown her more than a little. In addition oral thrush is back with a vengance affecting eating and sleep. The Nystatin isn't doing the job this time, so she's going to ask if there's any alternative she can have. Maybe something she can take prophylactically at the start of a cycle given she's had the thrush from day 3 or 4 of the last 3 cycles.


Wednesday will be a big day as it's our trip to london. She's told me she's not up for the fight with her surgeon and oncologist and has asked me to deal with those discussions if she decides to go ahead with nanoknife (funnily enough the motivation behind the last post). Of course I'll do that for her. It's just a shame I might have to.


Thinking tonight of her, but also of Aimie and her family, June, Emma and others who have lost loved ones so recently. All of you give my Mum and I motivation to do our part to try and find a better way.


Love to all


Sarah

XXX

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Sarah, the reluctance to endorse NanoKnife is strange to say the least. The Surgeon here who told me I was inoperable surprised me by dismissing NanoKnife out of hand. He has otherwise been very supportive and was keen to operate, but we believe the MDT probably overruled him. Surely, until trials are undertaken, anyone going for this option is effectively supplying 'the system' with valuable data on the process which can only help fellow sufferers in the future. Your previous post regarding apathy states the case and principle really well and support (if not total endorsement) of the specialists is surely not too much to ask for?!


Hope your Mum picks up a bit soon.


Take care


Steve

X

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Sorry to hear your mum has the blues Sarah. Its not surprising. Your daughter is fighting tooth and nail for you and you're feeling positive. Then the very people who should be actioning your treatment put obstacles in your way. FRUSTRATING!!!


Im sure you'll do your utmost to resolve this Sarah.


Hope your mum's thrush clears up soon, its so unpleasant, and shes soon ready for another push.


My best to you both.


Jullia x

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Your support means a great deal. Especially given what I know about both of your journeys.


I gained an additional perspective on nanoknife last night while trawling the web. A sample article for a new journal http://www.cancerstrategiesjournal.com/McKeeMDReprint.pdf


It speculates there will be a move towards systemic therapies that do not attack the immune system in the way chemo does. A combination of genetic, immunological and/or surgical treatments complimented by assessment of systemic health. Focussing on diet, mental health, fitness and other things that can directly or indirectly affect the person. It posits that maintaining health of the whole person supports our own natural means to find and destroy mutated cells. A process our body goes through every day. See some evidence on here for people regaining health after chemo or radiotherapy and tumors or mets shrinking a number of weeks/months after treatment stops.


Of course, many cancers sneakily work to switch off parts of our immune response to ensure their own survival and age/unfortunate inheritance increases the errors written into our dna, but it still feels worth considering as at least one corner of this argument.


The part that chimed with me most was speculation that treatment (nanoknife, expert complication free resection) that can remove most or all of the detectable cancerous tissue without laying the person really low, might reduce the cancer related burden on a patient's system to the point where natural internal cancer killing mechanisms can kick back in.


I don't know. It's all so damn unfathomable and nothing solid out there to support or disprove. Also would hate this to make anyone doubt a planned path for current best in class mainstream treatment. It's very much a double edged sword for us. Let's face it, there would be an additional risk of spread if chemoradiation was delayed while the tumor changed size or shape post nanoknife. Would the supposed systemic benefit of reducing the tumor's size offset that - who knows. But unless someone tries, unless others follow, there won't be the stats (as Steve so sensibly pointed out) to go into retrospective studies and provoke funding for those large randomised clinically controlled trials.


Also, with the sytemic health effect supposed in the article - Mum is immunosuppressed and I would never push her not to accept post surgical chemo as it is the main proven remaining defense against unseen distant spread or cancerous cells with potential to become mets.


I'm a logic monster by nature. Give me experiments, research and trials, but with aeons of chinese medicine focussed on balancing the whole person contributing daily to mainstream drug developments, increasing trust from a large portion of the population in at least one "alternative" treatment, proven links between stress/depression and immunological wellbeing, aborigonals who can "think" themselves to death and the power of faith and prayer showing frequent statistically significant impact on the wellbeing or recovery of many patients, it's hard to summarily dismiss these ideas.


Am I working too hard to find anything to support nanoknife as a way forward - NO. Am I working to comprehensively fill the list of pros and cons with the full range of currently available information, evidence and expert opinion - Yes.


And yet again I've written war and peace!. For me writing and talking are part of my reasoning and analytical process, so guess everyone should think themselves lucky I haven't got their phone numbers!


Obviously thinking too hard for my own good (a habit), but looking forward to filling in some gaps in knowledge on Wednesday. Mum, thankfully, is feeling more at peace with alternative thrush treatment and some support from an unexpected quarter. Her local elderly GP. He told her the medical profession has a giant turning circle and no respected specialist is without a board to answer to so can't recommend unproven treatment. He also said that she shouldn't, if she trusts her initial instincts about these men, expect problems if she decides to go ahead. He basically said she should go with a completely open mind, ask ALL her questions and trust her instincts, then let everything else sort its self out.


Got to love that man!


So probably time to sleep. Thanks again to all for giving me perspective on my own, very insular thoughts. Ain't that just the kicker with this. If patients veer off the well trodden path in terms of their characteristics, cancer, symptoms or treatment preferences, patients and carers can quickly feel very isolated and lacking in support from the medical professionals we've chosen to trust.


Thank god, yet again, for this site.


Sarah

XXX

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One wonders if these thought processes have occurred to the professionals? Especially the 'we won't know unless we try' element.


The mind boggles.


Keep fighting the good fight Sarah!


xxx

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