A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby nikkis » Fri Nov 22, 2013 10:07 pm

Paul's surgeon and oncologist work for the same group as prof , and are pretty dynamic Sarah, so happy to give you details if you need them.
Nikki

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby InfoForMum » Fri Nov 22, 2013 10:14 pm

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

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby nikkis » Fri Nov 22, 2013 10:25 pm

no problem, will do that Monday, and if I forget (quite likely as I struggle to remember my name at times at the mo!)please ask them for my email,
Nikki

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby InfoForMum » Fri Nov 22, 2013 10:38 pm

lol, will do.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Deemed suitable for nanoknife, but onc/surgeon objecting

Postby InfoForMum » Sun Nov 24, 2013 11:56 pm

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.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Cycle 5 Blues

Postby InfoForMum » Mon Nov 25, 2013 12:29 am

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

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Cycle 5 Blues

Postby Slewis7313 » Mon Nov 25, 2013 8:05 am

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

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Cycle 5 Blues

Postby J_T » Mon Nov 25, 2013 8:29 am

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

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Bring on that nanoknife consult.

Postby InfoForMum » Mon Nov 25, 2013 9:12 pm

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/ ... eprint.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
Last edited by InfoForMum on Mon Nov 25, 2013 11:54 pm, edited 22 times in total.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Bring on that nanoknife consult.

Postby J_T » Mon Nov 25, 2013 9:38 pm

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

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Bring on that nanoknife consult.

Postby InfoForMum » Mon Nov 25, 2013 10:25 pm

Thanks m'dear. Kind of helpless as regards the fighting. Struggle to stop! God knows what I'll do with myself if she finds herself disease free (apart from all the endless celebration, planning holidays, cherishing every minute and thanking any deity I can think of!). Next step would probably be seeing if PCUK need any help (if they can stand all the long windedness).

For context on the above post (rant / brain dump) I do have some of my own experience. A while back was tested positive for high risk pre-cancerous cell changes after a regular smear test. The gynae was pushing for LEEP (carving a chunk out of my cervix with electrical wire). I asked what the risk of waiting another 3 months might be. The answer was "probably minimal". I wanted to see if my body could fix it. Quit smoking, lost weight, did more exercise. Next test and all since - all normal healthy tissue. Doesn't mean I'm not super vigilant or writing off that treatment if needed later.

Not advocating anyone refuses treatment and my story is totally irrelevant to PC sufferers cos of how diagnosis works (doesn't work). Pre-cancerous pancreatic cells pffff.. may as well not exist as no-one gets in there quick enuf to see any! But it's maybe a minor example of what a body can do.

S
Last edited by InfoForMum on Mon Nov 25, 2013 11:09 pm, edited 1 time in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Bring on that nanoknife consult.

Postby Slewis7313 » Mon Nov 25, 2013 11:03 pm

Hey Sarah, it's a long time since I read a really good book but I think that changed this evening! All really interesting stuff and looking forward to the sequel.


Thanks!

Steve
X

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Bring on that nanoknife consult.

Postby InfoForMum » Mon Nov 25, 2013 11:15 pm

lol ta :-)

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Bring on that nanoknife consult.

Postby cestrian » Tue Nov 26, 2013 8:39 am

Hi Sarah

After reading all that not sure about my Lucozade addiction!! Maybe I'm providing the very food that my tumour and its lesions crave - any thoughts! Perhaps I should listen to my beloved daughter more carefully as she is always talking about diet Etc whilst I'm just busy stuffing my face to regain the weight I lost.

Off for a blood test this morning in "Genetics" to check for presence of the rogue gene that may have caused 4 out of 5 of my siblings to have cancer.

Keep fighting for your Mum - you daughters are amazing and like you my own dear girl can always be relied upon to leap in where angels..............!!

Love and Peace

Mike x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Bring on that nanoknife consult.

Postby InfoForMum » Tue Nov 26, 2013 6:07 pm

Thanks Mike, if there's any justice Lucozade is thoroughly balanced out by the completely wonderful warmth and positivity that everyone on here so enjoys and admires!

As for daughters - they're the product of their parents, so you can't wonder too hard at all ms mike jrs strength and determination ;-).

Good luck for that genetic check. Mum's keen on getting her genome mapped as she was adopted so have no medical history on her side. Except for 3 out of 4 parents with cancer between Paul and I we've had no instance of sibling issues, so that's good news.

Sarah