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Sones
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Joined: Tue Aug 21, 2012 7:31 pm

Re: Carls story

Postby Sones » Fri Jan 24, 2014 11:30 am

Always in my thoughts Rob, I do hope Carl gets a break from feeling so bad soon and that all goes well with the nanoknife. lots of love Sue.x

RLF
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Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Fri Jan 24, 2014 11:54 am

Thanks Sue, you've always been a great help to Carl from day 1 x

RLF
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Re: Carls story

Postby RLF » Mon Feb 03, 2014 4:47 pm

Well things have gone from straight forward to the most stressful time to date. After the hell of chemo last time the oncologist has reduced the irinotican (sp?) portion of the chemo to 50% to try to help with the side effects which is great, but sadly the chemo couldn't take place on thursday due to a low white blood cell count. Though I'm happy Carl's not feeling ill right now, I'm sad that we missed this week out. They wanted to book him in this week, but we had the nanoknife pencilled in for wednesday so now its not till monday the week after.

Now on to the crazy bit, after not having a confirmed session booked in for the nanoknife next wednesday I rang the insurance company to discuss the case and the lady on the phone said that they do cover Proff and do cover the procedure, but don't cover xxx hospital and that it would have to be done at the xxx. So I rang up Prof secretary and discussed that with her, and she said he can't do it at the xxx as they don't have the equipment there to do it, so do I want to just book him in and pay it myself (that's £13K I've suddenly having to find). I said let me try and sort something out and I'd get back to her. At a loss of what to do my mum suggested I rang PCUK and ask, so I did and Dianne was lovely and suggested I rang the insurance back telling them that xxx is the only hospital that does the ablation technique he needs (you cant say nanoknife, they don't cover that on their lists, you have to give them an ablation code XR964 I think). So that what I did and they actually did listen to that and told me that if Proff needs to writes a report to them and they might be able to overturn the restriction on that hospital for Carl. So with a little bit of hope now I called back xxxx and explained that with a report saying Prof and the princess grace was the only place that could do this technique it might all go through the insurance. Simone his secretary, who is great, told me that she'd get him to do it. That was about 2.30/3pm last Thursday. I rang friday morning and it had not been done. I was frustrated to say the least because if its not done this week, prof is away the week after and his anaesthetist is away the week after that, so its 3 weeks to wait! You don't want to wait 3 weeks, you want it done asap! S said she would email him and ask if he has done it or doing it, but I've still not heard back from her yet so no idea where we stand. I want the insurance company to have it today so that they can make the decision asap, hopefully before wednesday!

I'm so stressed out I feel sick and have a constant headache. I'm at that breaking point I think, if it was me with the cancer I would have given up now as I feel so defeated. Something simple as a basic report that will take 2hours tops, probably only 1 as it's just a cover letter really explaining the situation (I have to write these for work on a regular basis) but it could save someones life?! Why is a letter slowing it all down?

Ok I had written all that and had to leave this page and a lot of things have changed since I've got back.

I've now had a call from Prof who was very nice indeed. He's said nanoknife isn't needed on this tumour, that another method of ablation would work just as well. I assume he's talking about radio-frequency ablation but I'm not 100% sure. We are going to London this Thursday though to meet him and have another scan on the liver and then discuss what option the thinks is best. It might end up as nanoknife again, but we'll see! Bit sad the procedure wont happen this week though, we had expected it on wednesday, and sadly we won't be able to have it for 3 more weeks as Dr is away next week, his anaesthetist is away the week after, so the week after that is go week!

Another thing happened this week, and it was a bit of a shock and that's Carl's step mum read this post and saw what I wrote in my first post. She sent me a message on facebook apologising, and I felt terrible for hurting their feeling but this was supposed to be a bit of sanctuary for me to write what ever I wanted to without comeback. But actually now I've had more time to think about it, I'm actually glad now. People need to realise how much stress we're both under, how frustrating it is to be the person who is continually bombarded with questions from sometimes 10 people a day. I know they both just want the best for Carl, as do we all!

Yesterday Carl's hair all fell out. Was so strange to see it happen. Not a little at a time, but all in one go, he's put some pics on his blog if you want to see the progression (http://www.carldenning.blogspot.co.uk/). I think he looks great as a skin head, but he's taking some getting used to it!

Thanks for reading,
Rob

RLF
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Re: Carls story

Postby RLF » Mon Feb 03, 2014 5:08 pm

Oh and if anyone has any opinions on nanoknife vs RF ablation or any other ablation techniques I'd love to hear it. If I have to push for the nanoknife because it's a better method then I will. I think because I've read so much on nanoknife on pancreatic cancer and pancreatic liver mets, it was what I was wanting to do and it seems pretty successful, but I haven't heard if RF is as good or not. In the USA everyone seems to have nanoknife now.

cestrian
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Re: Carls story

Postby cestrian » Mon Feb 03, 2014 6:14 pm

Hi Rob

God bless you both in your struggles. I think folk on here set a lot of store by Prof so you can hopefully rely on his judgement. I can understand your frustration at the delay but these things sometimes work for the best!

I had no hair to start with but poor Carl, what a shock to see it disappearing before his very eyes! He does look good without it though and I like his ideas on alternative brows. Stay strong together and keep positive in the knowledge you're doing everything that you can.

Love and Peace

Mike

J_T
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Re: Carls story

Postby J_T » Mon Feb 03, 2014 6:16 pm

Hi Rob, have no advice to offer sorry but after reading that I can feel your frustration. It sometimes feels like the only people feeling any urgency towards pc treatment are the patients and carers themselves. Why does it always seem to be that things happen at weekend/bank holidays or medics going on leave?! However Prof does seem to be in your court so that all sounds good.

I think Carl looks fab with the skinhead look too!

Onwards and upwards Rob!

Julia x

RLF
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Joined: Tue Nov 19, 2013 9:30 am

Re: Carls story

Postby RLF » Thu Feb 06, 2014 6:40 pm

Thanks Mike and Julia, he's taken to the bald thing pretty well now! Feels nice to be honest, bit like fuzzy felts if you remember those!

Today was a good day, a weight lifted off my heart and shoulders. Forgot what it felt like actually, still buzzing even after the 8 hour round trip to London. We set off at 7.30am today to head to xxx hospital to meet with Professor in regards to the ablation of Carls liver met. We arrived early(!!!) for once and so managed to grab a bite to eat from a local cafe, and let me tell you being vegetarian makes eating out surprisingly tough unless you want the generic vege burger and chips meal. I don't miss meat now, but I miss eating out! Anyway, Prof took us into a room and used an ultrasound machine to check Carls liver, he couldn't see a tumour on the scan at all, my heart skipped a few beats thinking "has all out lifestyle changes/chemo destroyed the tumour?!", but alas no, with the dye injected there is was in all its 2cm glory. Prof pointed out that because you could see particles of dye going in it was alive and active tumour, but there were signs of necrosis so it looks like it has started to die off a bit which I personally am putting down to my new militant style of controlling everything he eats and drinks lol.

Prof opinion was this tumour was "textbook" and in his words "a piece of cake" to ablate. I think he regretted those words a little after saying them, because he knows as well as we do (and boy do we know) things don't always go to plan, but he was very very positive that he could destroy this little bugger. Carl and I both shed a tear with all the fear and emotion built up inside us, but they were definitely tears of hope. The tumour is very close to the boarder of the liver, as in its just inside the liver, which means RF ablation would actually be quite painful because of this, so he is going to tell the insurance company that nanoknife would be the best option. If they refuse he will still do the RF ablation and Carl will be pretty sore for a while, but having gone through Whipple's and then 2nd surgery for internal bleeding, he is pretty good with pain now. We both know another tumour is likely to appear at some point, but Prof did say he should be able to ablate that one too. So, 3 weeks time hopefully it will be all done and dusted. 2 weeks after that a check to see whats going on and how well it's worked which is another day we'll be very quiet on the way down and hopefully very happy on the way back!

For anyone who is interested, here is a list of changes we have made to our diets, please bare in mind this is what I've come across over lots of reading, it's probably not right for everyone, but in Carls' situation we thought it can't hurt to try:
No alcohol
No coffee/soft drinks only herbal tea, homemade still lemonade, homemade juice from the juicer we bought, water
No red meat - we only really eat fish now
No dairy
No refined sugar and reduced general carbs (especially no bread, white pasta/rice/noodles) - apparently the tumour uses sugar to survive and with less sugar/carbs in your body the body burns fat to run on ketones which the tumour can't use. Cauliflower rice is amazing substitute for rice by the way! Google it.
Bitter mellon capsules (which I make myself using a pill machine and powder from ebay)
Bitter mellon juice, that i make with a juicer anytime I can find a real bitter mellon from a Chinese supermarket
Reishi tea - I make this with dried mushrooms from ebay, supposed to be good for the immune system and always been a mushroom revered by the Chinese for its live preserving abilities

and I think thats it...seems a lot actually now I read it back. But you'll try anything I guess.

InfoForMum
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Nanoknife Vs Cyberknife

Postby InfoForMum » Thu Feb 06, 2014 11:23 pm

Hi there Rob, I remember that shoulders dropping, emotions breaching floodgates feeling. Not surprising. Everything I have read on nanoknife suggests it can have promising results and hopefully he has a quick, simple, complication-free time.

I am not, and I stress this hard, from a medical background. Anything I post here is based on my own google and telephone enabled mini-masters in my mother's brand of PC and potential treatments. Having disclaimed every thing here, my take on the Cyber vs Nanoknife discussion is this:

Cyberknife has a far deeper pool of evidence around potential complications, post treatment symptoms and likely outcomes.

Cyber knife uses radiation and with radiation and associated heat comes the risk that nearby tissues and other structures will sustain permanent damage too. Far less risk with Cyberknife than less targetted RF and far less worry treating the liver than pancreatic tumours like my mother's (tucked away in the lowest part of the head of the pancreas hugging hepatic arterial branches, junctions of big veins, enzyme and bile ducts and nudging the big daddy Superior Mesenteric Artery or SMA). There's more of a playing field without vital vessels and structures in the liver and it helpfully functions perfectly well even when big chunks of it get damaged.

Irreversible electroporation or IRE (Nanoknife is the copywrited trade name belonging to the folk who make the kit that delivers treatment) causes doubts in much of the medical profession because of a lack of big trials and well evidenced benefits. That's something only time will change, but a lesser known fact is that IRE, while having little trial evidence to date, is not actually a new concept. It's an evolution of Reversible Electroporation. A technique with 20+ years history of punching repairable nanosized holes in cells to deliver tumour, gene or immunological agents deep into cell structures - done on animals and humans with significant success (while Wikipedia shouldn't be taken at face value it does give a good overview of both RE and IRE referencing research).

In the process of refining the reversible treatment they carefully identified the voltage and voltage pulse duration thresholds where irreversible damage starts. Therefore the effect of this treatment on cells and the way to create that effect are better understood than the reaction to this by NICE and many doctors would make you think.

For anyone not already bored Nanoknife damages cells in a different way to Cyberknife, laser ablation or ablation using extreme cold. Other treatments kill cells with brute force, whereas Nanoknife aims to cause Apoptosis. In basic terms, micro holes upset the molecular integrity or homeostasis of cells. If not repaired Apoptosis occurs - e.g. the body doing it's own housework, killing cells too sick to survive, the same way it deals with the turnover of all old cells in our body.

That brings me to one other consideration with Nanoknife - it's expected to be much kinder to nearby blood vessels than RF, laser, or cold ablation. As the prof explained to me, nanoknife, because it's causing apoptosis rather than scorched earth destruction will damage tissue cells that make up the surround of vessels within the target area, but unlike other treatments it will leave the elastic fibre "scaffold" of vessels intact onto which new tissue might grow, but if not the expectation is that vessels will be able to retain their integrity.

Nanoknife causes irreversible damage to the area treatment is centred upon, but there is also evidence that cells in about a 2cm radius are reversibly damaged, taking a ballpark estimated time of 10hrs to heal the holes made. That is why chemo is given concurrently if you wish. The theory being that it will get delivered far more effectively into holey cells (what reversible electroporation showed lots of value to allow in pre-IRE research as I said above).

Risk of seeding - Dragging cancerous cell from tumours out with probes or needles and depositing them into other areas of the body on the way, is what I mean by seeding. For this one I know far less about Cyberknife. I believe gold markers have to be placed in the target area to allow for precise aim with the RF beam, which might cause worry about stirring up cancerous cells, but I don't know if they get taken out later, so won't comment on that further.

Alternatively I had a good chat to the prof about this for Nanoknife. In short the risk of seeding is thought to be very low. That's because the probes are not going into the tumour. They are placed in the surrounding tissue. Of course there might be unseen spread beyond the border of the tumour, not identified by imaging. The risk of transporting those kind of errant cells is also mainly mitigated because the area around the probes gets the most intensive irreversibly damaging dose of electricity. Even if cancerous cells did get dragged out with the probe, the prof expects them to be dead as a door nail.

As with all the things I talk about here, there is not enough evidence to prove the overall benefit for survival, definitive view of potential complications and potential mortality (as one doc said, no-one has died yet, but they might one day). As far as preventing local recurrence is concerned, nanoknife doesn't leave any lasting protection and it has no theraputic effect on distant spread. No local ablation techique will zap unseen developping mets outside the treatment area.

A final IRE specific consideration is route of entry for the probes. I haven't got any formal sources for this, just my mother's experience. Her post procedure pain and digestive problems may or may not be due to the fact that the prof had to abandon plans to go in via her liver and go in via her stomach and pancreas instead to avoid the cyst sitting smack bang in front of her tumour. A "sods law" development after the pre-christmas planning CT. I am only theorising that an entry via the liver would carry less risk of post op symptoms, based on what I said earlier about the liver being a more robust and altogether less crowded organ. Mum was initially agrieved that a new planning scan hadn't been done immediately pre-op to potentially save her these problems, but she came down off that quickly when she realised that would have almost certainly lead to the procedure being binned so even the limited treatment to the area around the SMA wouldn't have happened.

Is that limited treatment worth the post op problems? If it stops the SMA being encased and leading to all chance of surgery being wiped out, probably yes. If she gets to surgery and gets a resection with clean margins, where she might not have done without this, absolutely yes. All of course moot if the untreated bits start getting all aggressively spready before, during or after CRT, but thems the chances we all take if we're lucky enough to be diagnosed while we still have chances in the first place.

On a more holistic front, which I think will resonate with you, I wrote the following post on my thread on November 25th (incase it doesn't take you straight there).

http://forum.pancreaticcancer.org.uk/vi ... =90#p10885

It links to a sample article by a medical professional for a new magazine called Cancer Strategies. It looks forward to how cancer might be treated in many years time. Talking about things like non-radio ablation to be used to reduce the the physical cancer burden on the body, concurrently with immunological treatment to reprogramme defensive T-cells to search and destroy cancer cells and effectively vaccinate the patient against future spread, while also working on a patient's systemic health (both mentally and physically) with diet, supplements and therapy to give the immune system every chance of helping treatment do it's job.

All sounds flipping marvellous to me and know of trials bringing the possibility of the immunological options tantalizingly close, but, as with all things new, it's going to be held out of reach for the vast majority of patients for some considerable time yet. Another thing on my list of reasons to support the Saatchi Medical Innovation Bill.

As a little extra wiggle on this whole thing, there's something new brewing on the non-RF ablation front. Ultrasound ablation. Some promising evidence in early research that it can achieve the same hole punching, cell suicide promoting effect as IRE, but with no having to stick probes into you. If interested ask the prof about it. It's his new baby.

Too much? Probably! Kind of cathartic to spit out some of the hard won knowledge picked up in the last few months. Having said that I must top and tail this with the same point - I'm not medically trained. More research and more trials may have been done I haven't seen and I may have misinterpreted something, so always, always rely on the experts in these fields for advice!

Sarah
XXX
Last edited by InfoForMum on Fri Feb 07, 2014 2:12 am, edited 2 times in total.

RLF
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Re: Carls story

Postby RLF » Fri Feb 07, 2014 1:03 am

And breathe... lol

I bet like me you are so used to spouting that info out to anyone who will listen! I tell my patients at work every minor bit of info I've found out, and credit to them they at least pretend to be interested :)

I think we'd take either really, I like the idea of the RF ablation because I'd burn the little fooker myself if I could! I like the sound of the Nanoknife because it has fewer complications for him. My heart lies with nanoknife for some stupid reason. I feel fate took me to it and so it must be the answer to our problem. I spent ages researching, mainly on american forums and kept seeing it mentioned, so after reading about it I tried to find out if it could be done in the UK and that's what brought me here, one of the ladies real life stories is a nanoknife case for liver mets. Proff Leen seems to think if the insurance will pay nanoknife is our best hope, especially with where it is in the liver, but we'd happily do anything, as most of you understand.

www.carldenning.blogspot.co.uk to see his updates from today, and see my fantastic camera work lol

InfoForMum
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Re: Carls story

Postby InfoForMum » Fri Feb 07, 2014 1:21 am

Lol at the breathing crack. Believe it or not I don't talk as much or as quickly as I type, whereas my sister does and we all sometimes wonder why she doesn't pass out from oxygen deprivation. Also, the evangelising thing - SOOOoo identify deeply with that. Think yourself lucky you have a captive audience who's at least partly expecting delivery of medical lectures. In my case there are a few colleagues, family members and random passers by who probably wish they'd run in the other direction before I got started!

While not trying to start a mutual appreciation society I also get the very illogical equal trust placed in both your guts and brains. Believe entirely that some things happen for a reason and historically, admittedly not in life threatening situations before, my instincts have been almost 100% right.

Will go view the piccies as loved the bold, brave and bald ones. Tell him I think it suits him really well and there's a lot to be said for ears like his, but perhaps not in polite company!

Sarah
XXX

Didge
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Re: Carls story

Postby Didge » Fri Feb 07, 2014 11:06 am

Thanks Sarah, that was most interesting! Unfortunately we would have to pay privately for the nanoknife and can't see how that could be done unless we can do some serious fundraising. And Carl, I am with you on the holistic approach too - anything which helps the body to cope at the very least can't be bad. I have limited (very limited) success with my bf as he has spent all his life on what is known in the US as the SAD (Standard American Diet) with a lot of curries, Chineses thrown in too, together with vast amounts of sugar! Have no way near your success of controlling his intake - which I had! Good luck
Didge xx

J_T
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Re: Carls story

Postby J_T » Fri Feb 07, 2014 12:34 pm

fascinating to look at the scan Rob, I never saw any of Ray's.

RLF
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Re: Carls story

Postby RLF » Mon Feb 17, 2014 4:41 pm

Right been a while so here is an update. I know I can be a little long winded so I'll try to keep a long story short.

Like you Didge we can't afford a nanoknife on our own, my father in law was kind enough to offer the money for it if we needed it but we both felt guilt about this and luckily we have private health care as mentioned. Now after the scans Proff Leen was going to write a report to the AXA people saying he wanted to do an ablation but not saying nanoknife as they don't cover it. Not surprisingly to me (sometime I just wish I could do everything myself so it is done right) he wrote nanoknife on the report, so they rang to say no we don't cover that so we won't pay out for it, it's not a proven therapy that works (boy did she sound smug and like she was saving us from something experimental). So looks like we aren't going to princess grace now and we'll be going to the london clinic for the RF ablation instead. It should work as well but he'll probably have a lot more pain after so it's just a bit frustrating that the one thing I kept stressing shouldn't be written on the report, was written. When I rang his secretary and told her she said "oh no! I didn't proof read it, but I did remind him!", and how I wish she had proof read it. Anyway sorry to sound so ungrateful, I am pleased we still can have something done and it's on the insurance but it's just drifted away from the plan I had in my head of what I wanted to be done, and so I feel a little lost and scared as it's the unknown.

We go to London a week on thursday to have it done, we go into surgery at 7.30 and he should be done by 8.30. Crazy that something so quick could be the answer to all this worry, for now at least, I know this thing can throw curve balls way too often.

Carl had chemo number 2 a week ago today. His white bloods were still low and only just in the ok range to get it done which amazed me as it had been 3 weeks since the last one. He had loads of meds to help this time, but he was still really really ill. Still is to be honest. Today is the first day he's been up and about on his feet without saying he feels dizzy and needs to go back to bed. Sickness and diarrhea were not as bad as last time, quite a lot better in fact but I still went through 9 of those cardboard sickness bowls in the first 48hours, though last time he did that in about 3 hours so yes bad but better. He felt something new this time though, like electricity running through his body which stopped him sleeping and made him feel pretty rough. Not sure what that was a reaction to, but we will tell the Dr next time and hopefully they might be able to help with that.

I'm having difficulty with keeping him eating the foods I want him to at the moment, and 'cos he feels so unwell with the chemo I feel like I should just give him what he wants, but I'm desperately trying to keep him eating really well but we've had a couple of Chinese takeaways making it into the house, though always tofu so no meat but I think laden with sugar. If I don't give him his parents do so he gets his way the little swine lol. It's cheese he craves mostly right now so i've orded some non dairy and hope it comes soon.

Yes J_T as someone with some radiology training it was really interesting, though ive never used ultrasound for imaging before so didn't really know what I was looking at.

Anyway, hope everyone is doing well and thanks again for reading.
Rob
x

P.S oh and for anyone looking at hat shopping (that's all we seem to do these days lol) TK Max is really good for it! At least the 2 big ones we have been to were, so I think we have at least one for each day of the week now!

J_T
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Re: Carls story

Postby J_T » Mon Feb 17, 2014 10:37 pm

Hi Rob, sorry to hear Carl is struggling a bit, it's just a constant, exhausting battle :(

All this 'oh we don't cover that' makes me SO cross! We're talking about someone's life here, someone who deserves the best chance they can get FGS! Hopefully the alternative treatment will be just as good. KBO guys!

Thinking of you both.

Julia x

InfoForMum
Posts: 332
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Re: Carls story

Postby InfoForMum » Tue Feb 18, 2014 2:24 am

Awww Carl, so sorry he's so poorly. A few practical tips on the old cold sensitivity. Rubber gloves next to the fridge and freezer - expensive thin but grippy ones are good - colour and design optional. Silk socks, silk helmet liner (the kind bikers use rather than anything else!), silk ski glove liners and other optional silk underthings. Good for layering and very kind on skin that can be very dry and sensitive. Double sided faux fur fleece throw. Great king sized ones on Amazon for £15 quid that machine wash. Don't fork out squillions unless either your design ethic or objection to manmade fibres forces you too. Mum's was always next to her fave chair so a nap was an easy option. Good exfoliating mitt and for a touch of luxury some uber rich L'Occitane body lotion - 25% shea butter if you can afford it. Very kind to poorly skin, low odour and very, very indulgent.

As for the docs FUBAR. Bloody hell! He had probs with his report for Mum too, but it was only cosmetic. Called her "borderline respectable" instead of resectable and to be fair it's not entirely incorrect. I'm hoping your underlying belief in things happening for a reason will comfort you both with this. Tis horrid having a plan blown out of the water. You'd think with the oceans of uncertainty the universe owed us a favour with the small stuff, but it may turn out to be the absolute best thing.

Take good care m'dear, lots of love and luck to his nibs for the procedure and keep us posted.

Sarah
XXX