She's gone

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

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

lol ta

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

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

Hi All,

Promised an update. Well there's more to update on than planned. The consult on the procedure its self was very positive. Mum's tumour is 2.5cm wide, 1.5cm deep and he operates on tumours up to 5cm. 50% of his patients also have liver or other mets, so Mum, all things considered is in a subgroup he could potentially help the most.

More on that later. The shock was that he showed us the CT to explain his thoughts then launched straight in with - "As your tumour is obviously unresectable...." - YOU WHAT!!!! Those who know the thread know mum's cancer has been classed as borderline resectable from day 1 and to quote her surgeon after our very first consult back in August - "the tumour is technically feasible to resect now, but chemotherapy followed by chemoradiation is recommended to stabilise it and minimise the risk of metastasis or progression of any pre-existing, but unseen distant spread". A conclusion and recommendation backed up by the MDT at our local specialist centre and by his London MDT.

I was ready to put the prof's take on things down to the fact that arterial involvement has always historically meant no surgical attempt due to a lack of the very specific surgical skills/experience to even attempt it, risk of serious operative complications and higher risk of recurrence, but that's why we went to our surgeon. He has a reputation for arterial resection/recontruction. BUT he then pointed out total encasement of the Celiac Axis! We always knew about celiac/portal vein junction being involved as well as right hepatic arterial branch involvement and likely left hepatic branch and partial encasement of some of those was discussed. This suggested a whole new ball game. Suffice to say we're going back to our surgeon for a second opinion on the scan as imaging report from local radiologist didn't mention that and local oncologist only confirmed last week we were still good to go to try eventual surgery if things stayed stable. Trying to bear in mind that Prof is not an HPB specialist or surgeon, so there could be something lost in interpretation of image (so damn variable depending on quality of the scan and expertise of radiologists).

Mum warned me she thought she might have a bit of a melt down, but after a stiff coffee and an hour of working through what she'd heard she astounded me by pulling herself together and putting that back in a box until second opinions are in. She is incredible and I continue to be in awe of her!

Whatever the outcome, our nanoknife expert is absolutely confident what he has planned should not risk either chemoradiotherapy or surgery, if they are still options.

Mum has therefore weighed pros and cons and as of tonight she is planning to go ahead with this on 18th December.

There are many additional ins and outs I could add, but still taking this potential whammy about the chance of resection on board. To do list for tonight/tomorrow is to set the prof's secretary on the insurance company, get a referral to the prof's recommended oncologist to pick up where specialist centre leaves off after final cycle folfirinox and to get that second opinion on 12th Nov CT.

All aboard for the rollercoaster yet again!

Love to all

Sarah

XXX

You're getting nanoknife that's GOOD! The way I see it is in simple terms, you are doing, and being successful at,mgetting all the available treatments for your mum, not a lot more you can do Sarah. Of course these guys and gals are experts but they don't know everything. The are amazed by patients every day.

Bloody good luck with it, I think it's amazing!

Julia x

Thanks lovely. We agree it's a good thing. Hopefully, as David heroically said, we can add to the info and evidence needed to make this an option on the NHS. NICE ain't going to approve without large trials, but large trials aren't going to get the bucks without evidence of efficacy and long term survival. Won't happen quick as this has only been being done for max 3 years so far, but every little helps hey!

S

At last we've managed to dig out the link to Purple P!! I'm right above Hugh Grant - only time my photo and his will ever be in close proximity I suspect!

https://www.pinterest.com/PCAction/purple-p-campaign

Sorry I can't work out how to make it an active link - Ned Ludd

lives!

Love and Peace

Mike

Well blow me down it's been done by magic - and it works!!! M

Sarah, if I could add a statement from the professor who did my operation in XX it might help put things into perspective. They did a 64 slice CT scan during my consultation, but still decided to go ahead. After the aborted procedure, the surgeon stated that where cases are marginal, the only way to be sure is to go in and have a look and feel it!

After my experience, my personal take on CT scans is that they do not tell the whole story and appear to be open to interpretation, sometimes in your favour and sometimes against. Whilst Professor Len is obviously a very respected professional, you are totally right to go for a second opinion regarding operability.

For information, NanoKnife remains on my radar for the New Year (having a break for Xmas though).

Good luck

Steve

X

Mike: Elaine's dad?

How do you do?! Lol

Nice one!

Sarah

Great news that your Mum is thinking to go ahead, I remain. Convinced that the technology in the hands if the professionals such as prof. l gives us hope. Inoperables like myself need something to chase, it's more tangible than a rainbow and I await to post results

In the meantime get your list ticked !!

Keep fighting the fight and don't fight a fighter if your name is mr. Cancer ( my silly motto to keep me sane today ! )

David

Hi all,

Nothing ever seems straight forward does it but it does sound so positive re Nanoknife.

Mike, great photo!! Lovely to put a face to a name.

All the best everyone

Cathy xxx

Love the photy Mike. Thanks for that David, have list ticked. Can't say the work to do list looks the same but hey ho. As a 2nd week back pressie, helping someone scope work to close an audit point (because I had very specific experience of the processes needing fixed) turned into me being given the audit actions to own <<

Steve, I really appreciated that context. Kind of had it in mind and did follow up with the good prof as when I researched the anatomy of Celiac Axis placement compared to the pre-reported arteries involved it didn't add up. Not with such a small tumour. Far more likely a body tumour would go that direction. He replied first thing to say it could be atrophy, scarring or remaining inflamation from enzyme duct blockage or pancreatitis, so as you said, to keep an open mind and wait for next scan.

Beyond that some other news. Her CA19-9 levels were checked 4 weeks ago and after consultant insisting we not be told over phone saying she'd call and tell us, and repeatedly not calling we were worried it was dire news but its, not too bad - 126. Crap that's a 60 point increase after an initial decrease from 90 to 50, but it's nowhere near as bad as many.

All in all a great scene set to head nasty boy off at the pass and shove an electrode or two up his behind. Insurers have been a bit jumpy, asking for all kinds of clarifications and I still need to break it to existing onc and surgeon that we pretty much ignored their advice, but in grand scheme of things that's nowt!

Also, in spirit of my war and peace post on systemic wellbeing, Mum is doing great now we're day 8 and has got her GP on board to do the holistic bit to keep her there as much as poss (keeping eye on BP, blood sugar, vitiamin/mineral deficiencies, other odds and bobs) so all the onco type folk can keep tunnel visioning at the tumour. Was really impressed she'd gone sorted it. Think it's a marvellous idea.

Love to all

Sarah

J_T wrote:

> Mike: Elaine's dad?

>

> How do you do?! Lol

>

> Nice one!

Yes it is I LeClerc!! My lovely daughter entirely responsible. Also responsible for the two phone calls I received in Lanzarote this morning from people who had "found" my Jack Russell, Holly who had strayed off while being walked with the other three! I am assured she will be a glove by the time I return if she repeats this episode. Meanwhile bright sunshine and relaxing tapas lunch today!!

Love and Peace

Mike

I-SPY Creon on the sofa lolol!

Green with envy you're in Lanzarote, ENJOY!!!

Glad naughty dog got found. Folk who havne't owned dogs rarely get how much they mean to us so despite the threat of turning her into winter hand wear I suspect you're chuffed to bits. Also lovely (and annoying!) you're sunning yourself and relaxing while I'm digging out my thermals and expecting to defrost my car tomorrow before I can go anywhere.

Have a jar or two for Mum and I!

I've popped back on at this ungodly hour as we've had another discouraging mail from our oncologist. Having taken the plunge and told him it's going to happen. He came back with a response that started.

"To be honest I do not have experience of nanoknife", then after expressing lots of concerns about lack of proof of efficacy and risk to derailing/complicating conventional proven therapy:

"If we believe that conventional (ie proven) therapies are the right approach then I would strongly advocate continuing with the plan of radiochemotherapy and then surgery. If we don’t believe that radiochemotherapy and surgery are right then nanoknife seems worth trying –but only if you have ruled out surgery and radiation as curative approaches"

To me that says we're at risk of losing him by going ahead. I honestly don't think that will impact Mum's decision, but could cause acres of heartache following as it presents the prospect of a prolongued stay away or daily long trips to have CRT elsewhere.

So far we've been really impressed with his holistic, patient centric approach and felt we had developped a great relationship with him. I also think his statements come from a deep and genuine concern that Mum is mucking up the best chance that proven treatment can offer. Lets hope, once the dust settles, all that care and integrity allows him to agree to differ and pick back up with the treatment plan he already believes is her best chance.

I want to caveat this by saying Mum's choices should not influence anyone else. Resection is and will likely remain the only curative option for a long time. Any diversion from proven treatment is a significant risk that can only be taken by individuals on a case by case basis after taking all expert opinion into account.

I've said a few times there's only so many fights you can have at the same time. This feels a tad like one too many.

Sarah

XXX

Hi Sarah,

Hmmm.. So he hasn't actually said that he WON'T go ahead but is just expressing concers as he has no experience of nanoknife.

You've been impressed with his approach so far so let's hope that when he sees your Mum's determination to go ahead he will stick with you both. I hope so. It must be such a worry when there is more than enought to worry about anyway.

Lots of love to you both

Cathy xx

It's tough I know Sarah, but I'm very impressed that he took the time to write to you! We constantly have to make difficult choices, and I admire you and your mum for not taking the easy option. Sometimes I think it is a question of choosing the option that we can most comfortably live with if things do not go to plan.

Nikki

Cathy, thank you, you've mirrored my hopes for this. I'm usually a good judge of character, so let's hope you're right.

Nikki, you have utterly hit the most important nail on the head. Mum and I talk often about the thing we both desperately want to avoid...any deep regrets and "what ifs" somewhere down the line. Those are the things that haunt you.

Imagining NOT trying it and picturing that consultation where they tell us it's spread or no longer treatable. Arguably a negative mindset, but to me it's a proactive thing. Accepting there are no do-overs and part of gathering all the evidence to make a choice.

Prob not making sense, but again thanks for both your advice and support.

Sarah

XXX

p.s. Going to slow up on the posts for a while. Have had an eye opener that's made me realise I could be hurting people by complaining about logistical issues getting care that most aren't fortunate enough to have a chance of. If I've caused any upset I'm truely sorry. Also worth reassuring folk I'm not in denial, neither is Mum. We're just ducking the grief thats pretty inevitable if all options are exhausted or when the wee bugger gets up to the usual PC tricks. For now it's about having the right fight.

Hugs to all

S

So, it's arrived. Home with Mum after our last day on the ward. She couldn't quite believe she'd made it, pretty well intact, to the end. Despite saying I would slow up on posts I thought this was worth it.

I haven't posted on symptoms since cycle 4, but thought a round up was justified.

Cycle 5 - Tingling and cold sensitivity worse from day 1. Still manageable, but more precautions taken (balaclava for dog walking, ugg type boots all day, sturdy washing up gloves to do anything with cold stuff). Fatigue worse and came on earlier - days 5-7 were mainly for sleep. Oral thrush came on day 4 this time. Nystatin stopped working, but Micronozole gel did. Back mainly to herself by day 8. Dog walked every day despite all of the above and taste effect and mouth affected eating until day 8, but caught up after and weight UP by 1lb on weigh in today. Previous diarrhoea that led to dose reduction for cycle 3 showed up day 4, but only as 1 episode each morning for 5 days controlled by immediate dose of 2 loperamide tablets (immodium). Never had a problem after that during the days.

Cycle 6 - For the first time wobbly immediately after chemo and cold sensitivity started during. Got tablets for oral thrush she's going to take prophylactically from today to stave that off. Planning to write off days 4-6 and have duvet days. I'm on standby for dog walking.

No severe nausea and no vomiting since cycle 1. Put down to the switch from domperidone to Emend as her anti-emetic. The PPI Omeprazole also banished all indigestion. Benefits of both these things cannot be underestimated and resolution of both jointly down to us badgering docs to get alternatives and great advice from forum members and nurses on what to ask for.

Her blood results throughout have remained good. Bloods before this cycle, for the first time, showed red and white cells dipping very close to the minimum "normal" levels. To be carefully monitored for this cycle. She also still has high blood pressure that's unexplained (170/102 on admission, but down to 153/84 later today). She's taking that to the GP to discuss. Also she has had continuously high liver blood results for Alk Phospatase (think I have that right) and GGT (4-5 times higher threshold). Initially written off to after effects of jaundice and pancreatitis pre-chemo, then to toxic effect of chemo, but always a concern it indicates liver is suffering due to unseen mets - still pushing for a best medical opinion on this.

To finish the long story about her bilirubin levels - over 300 the day before stent went in. Today - 4. A really 40 horse power good news story.

No issues with either stent or central line, despite blockage (for the stent) and infection (for the line) being real concerns. In terms of central line I'd like to think that's due to my meticulous care removing her pump and flushing her line and also her scrupulous self-care and washing regime. Whatever - it's just been lovely not to have any extra complications to deal with.

She still has most of her hair. Her's was short and her hairdresser said yesterday she has some minor thinning, but all over rather than in patches. She has been lucky enough to look like her, but with greyer hair (avoided colouring it), thoughout.

If you wade through all posts and are facing folforinox I hope this offers some hope that it may not be as harsh for all as you think. Mum was very strong and generally well with no cancer related pain and weight loss already controlled by CREON before she started, but her relatively low level symptoms have been a surprise given what we were told and what I read up front.

It must be borne in mind Mum was on a modified regime. Only 75% of the recommended Irinetocan dose and no 5FU bolus. Just the 5FU 46hr portable pump to take home. She also had a post cycle 4 scan that showed mainly tumour stabilisation and no mets, but her CA19-9 was up. Was this down to having less than full dose? No-one will never know. There's no good evidence on variable efficacy for dose modifications, but the general consensus from the sparse studies is that it shouldn't make much difference. Also, many people do not end up getting the full planned cycles at planned dose because of one or more episode of serious symptoms, so we chose to fall back on the advice of an experienced oncologist at the specialist centre, and choose to have no regrets.

I hope this is the same for most people, but I recommend visiting other threads here about Folforinox to get a balanced view and speak to the nurses for more details about possible symptoms, symptom control drugs and what else to expect.

Take care all

Sarah

XXX

Hi Sarah

A fantastically detailed and informative post that will be of value to many who are about to embark on this therapy or have just done so.

With regard to your previous post I do not believe you should worry as we all have our own story to tell. I have often railed on here about the Post Code lottery when I've heard of those whose treatment has been woeful compared to the great care I receive in my area. Like you I've sometimes felt that you must all think what a smug pillock I am ( Do tell!) but I still think some things are worth saying and may well inspire someone to push that bit harder for themselves or their loved one. Keep posting - we'd all miss your contributions!!

Love and Peace

Mike x

Bless your heart Mike. That is very much appreciated. And in response to your question, no smug pillockosity detected, quite the opposite. All I see is greatful, happy and appreciative responses to your posts that reflect my own feeling about them. We all know it's easier to criticise than praise sometimes, so that must be a good sign!

Hope you are still feeling your sunshine effects and have hatches battened down if you're in the way of this storm!

Sarah

XXX

So after a psychologically harsh few days dealing with local oncologist and surgeon, finally have their response on on-going treatment if she goes ahead with Nanoknife.

Our oncologist (as posted previously) said he wouldn't consider chemoradiotherapy to follow nanoknife unless surgeon said he'd still consider surgery. After an uncomfortable day or two, surgeon responded to say he wouldn't consider surgery unless oncologist would perform chemoradiotherapy.

Two negatives equalling a positive i.e. our oncologist would be responsible for removing our chance of surgery if he doesn't go ahead, so is currently contacting the IRE specialist to find out how to replan CRT. To add a layer to the story I also approached the team in Germany who attempted Steve Lewis's whipple. Their first response was they would not consider surgery without CRT after IRE as well.

It's been an emotional rollercoaster, but as hoped for and battled for it looks like all original options will still be available when this has been done (unless their respective MDTs chuck a spanner in). Have to admit a few tears when that finally got sorted.

In true form I'm now working on another surgical second opinion to see if anyone would consider resection without CRT first. Protocol insists on CRT if the planned path was Chemo + CRT before surgery. However the reason for CRT (Localised control/reduction of tumour) is what Nanoknife should do AND based on limited evidence and specialist experience, it should not cause the damage CRT does (no radiation = no radiation or heat damage to surrounding tissues and vessels). As lay person, struggling to understand the benefit of both, especially if there's benefit to be gained from her regaining strength to monopolise on Nanoknife outcome.

I had also posted previously about the theoretical benefit of killing most/all of a primary tumour e.g. perhaps taking some pressure off the body as there's less cancer to fight/feed and maybe even allowing the immune system to recover enough to kick back in with natural cell destruction work.

I was very circumspect about that effect, but it appears that the theory has been deemed worthy of research. The PANFIRE Dutch Pilot Study is looking at IRE for unresectable LAPC focussed on cancer control effectiveness and safety, but is also looking for evidence of those kinds of immunological benefits. Will watch that with interest.

http://www.clinicaltrials.gov/ct2/show/study/NCT01369420?term=pancreatic+cancer+IRE&rank=2

Also wondering when results of the Angiodynamics (manufacturers of the IRE kit) study are due to be published, if they haven't been already. A US phase 2 trial on safety and effectiveness of IRE also specifically for unresectable LAPC. Shows as active, but with completion date of May 2012.

http://www.clinicaltrials.gov/ct2/show/NCT01369420?term=pancreatic+cancer+IRE&rank=2

Off to see the oncologist recommended by the IRE specialist on Monday evening and have hotel and parking booked for the procedure it's self. Everyone keep fingers crossed for Mum's health, my health and no weather issues getting in the way!

We've also got another CA19-9 result due on Monday. Hopefully that previous increase will turn out to be a blip as there's been 2 cycles since the last one. Would be nice to be ahead of the game from chemo to set the scene for Nanoknife.

Take care all

Sarah