Carls story

[RLF]

I hope it's ok to post in this section, as I'm not the patient but it is all about him.

I’ve not been coming on the forums that long, on and off for the last year and a bit, mainly because I found it hard reading everyone’s struggles, but stories need to be told because everyone is different and when I went looking for info I never really found someone in the same situation as us, so if anything hopefully someone else will get some help from reading this either now or in the future.

My partner Carl (whose story is on the website here http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/operable/carl) was diagnosed in September 2012 at the age of 38 with PC in the head of his pancreas. I came home from work to notice the whites of his eyes yellowed so we rang the GP, who’s receptionist said to us unless it was an emergency she’d rather we didn’t come at 5pm on a Friday night…probably wanted to get home early or something I don’t know. We didn’t know if it was an emergency or wasn’t and neither did she, so we said we would wait. He went in Monday and his GP (who is excellent) sent him off for tests immediately thinking, like me, that he had gall stones. Blood tests turned into ultrasound scan, turned into MRI, turned into CT turned into a Dr sitting on the bed and telling Carl he had cancer. It was a huge shock of course, but they had been warming us to the idea after the initial ultrasound scan. We were told about the whipples and about the chance it might not be possible and it was booked for 3-4weeks time after the initial diagnosis.

That day came, and it was a rough day, to cut a long story short we arrived at 7am and were told we were first to go through, we were then told that we had to wait for a bed to be free in HDU and if it wasn’t free the surgery wouldn’t happen that day. They said It had to be available by 11am or there would be no chance of surgery as it takes so long to do. Well a nauseating 4 hours passed by and 11am came and went and we both resigned ourselves to the fact it wasn’t happening, but amazingly at 11.05am a nurse came round the corner and told us the bed was free! And so off he went and I went home and sat with my phone in front of me hoping it wouldn’t ring and they tell me the surgery had been aborted. My phone rang x2 that day both Leeds area codes (I never EVER get called by a Leeds number) and both time my heart stopped and both times it was salesmen…you couldn’t make this up. We were lucky, the surgery was completed and they were very happy with the results. Carl had complications after the surgery of internal bleeding and they had to reopen him up to stop it, but after that a 3week stay in hospital he was home. The histology showed he had stage 3 PC as the tumour had damaged some bowl (I think) and 5 out of 12 local lymph nodes had cancer cells in them. I was surprised by this as the tumour when found was no bigger than 1.5cm in any dimension. In December just before Xmas he started his chemo, he was accepted onto a trial so he had Gemcitabine and a tablet though I don’t actually know what the tablet was but it was supposed to combine well and have better outcomes for PC.

Chemo was tough for him, he was very very sick on it, even though its supposed to be relatively easy to tolerate. They tried all kinds of meds to help him but nothing really did. He had it every week for 3 weeks then a week off for 6months. Those weeks off were great, but the week back on came round very quickly again. He finished the course and we were very happy. We went on holiday to Mexico and we got civil partnered in July. Things were getting back to normal and although cancer is always in your mind we managed to try to push it to the back as often as we could.

All his 3 monthly check ups were fine, his C19-9 staying at 9 or under after surgery. November 2012 Carl didn’t feel too well, so we went to the GP and for Carl's own sake did a CA19-9. It had risen to 90, which shocked us both. I did research and found that could just be a blip and it does go up and down sometimes, so I tried to be as positive as possible. In December (1st of be exact) on his birthday he collapsed and we went into hospital. He was bleeding from his backside and the blood was very dark and had a foul odour. They did all kinds of scans and tests to find the bleed source but couldn’t find anything, which we were told is actually a good thing, it usually means the bleed has just healed itself. However, on the MRI they did see a mass on his liver of about 1.5cm which was probably another tumour.

CT scans a week later confirmed it, and the next Ca19-9 was 270. The consultant told us the only option we had was chemo, Folfirinox (excuse the spelling) and that wasn’t as a cure just as a slow it down. Now I’m a medical professional but no expert in cancer or even a medical doctor or any kind, but I understand a lot about how the body works and I don’t accept that we should wait for someone to die at the age of 40. I read people having large metastatic tumours shrink with chemo then they use radiotherapy on them to ablate them, so I asked why we are not doing any radiotherapy now as its so small. He said that “we just don’t do that”. On further questioning the reason seems to be that if there is one tumour, then they expect there are more waiting to show up. I then said “but there could just be one” and he replied with “yes”. Well if there is a chance there is only one, then that needs to be our starting point. So I started to read anything I could, and have started him on lots of alternative therapies such as reishi mushrooms and bitter melon. Im considering hemp oil too but still looking into that. But the most promising thing I came across on the American sites was the nanoknife procedure that people had done for their PC and also for their liver tumours (I know some people on here have had it done now too, which is good to know) so I contacted the hospital l in London and we are hoping to get that done in the next couple of weeks. Thankfully he is insured by AXA PPP through his work and they will cover the procedure, though I would have found the £11k for it (I think they said it was about £14k for a pancreatic tumour and £11k for a liver met).

He started his chemo yesterday, and just like the first time he was REALLY unwell on it. He was being sick before it had even finished at the hospital and we were told that doesn't really happen normally on this chemo. We went home and he fell asleep and I thought that’s good, get some rest. He woke and had to run to the toilet as he had very bad diarrhea. I followed the protocol for the tablets we were given but he had it again a couple hours later, and was vomiting continuously. He started with the sweats and I just thought I can’t leave him like this so called St. James hospital and they told me to bring him in. So that’s where we are now and have been since 8pm last night. He’s still being sick now even after 3 different medications, but thankfully seems to be sleeping again. The last anti-sickness was an automated syringe that delivers it over 24 hours. His oncologist has said that they will give him this every time now preemptively so hopefully next time he’ll be a bit better with it.

Anyway, the chemo is every 2 weeks, and I’m trying to get the nanoknife booked on an off week so he’s hopefully feeling up to travelling a bit more, but next week Professor is away so will have to be the one after that. Id like it soon as possible but I cant see him being able to travel to London the day after chemo if he’s anything like this! So 4th or 5th of Feb will most likely be the date.

I guess my hopes are that the nanoknife will ablate the small tumour that’s grown on his liver, the chemo will also kill of some of the tumour cells and any other ones that are maybe lingering around in the darkness. His oncologist has been great, he’s happy for us to try anything and has given us the referral letter we need for the insurance company. He’s also unsure what he should do treatment wise as he’s never had someone who’s had a nanoknife. He said that if the nanoknife ablates the tumour then the chemo isn’t really necessary as you only have it when there is a tumour there. What he has suggested is that we have the procedure and do chemo for 3months (half the 6months he initially suggested) and then use the scan results to see where we go from there. Seems like a decent plan to me!

Sorry for the long post, it could have been a lot lot longer, he hasn’t had the best of luck lately with his health, we are always in the hospital, but that’s a year and a bit summed up pretty well I hope.

Im treating this a blog/diary/self help therapy session I suppose, though I am having counselling at the macmillion centre too which I wasn’t sure if I needed, until I walked in and burst into tears when she just asked my what my name was…not even sure where that came from lol.

Thanks for reading and hope it might help someone who is in a similar situation.

[MSH]

Sounds like a good plan. I hope Carl is able to tolerate the Folfirinox and wish him well with the Nanoknife.

[J_T]

Ditto to what Mark said, wishing Carl the best of luck with his treatment. It sounds like it's been quite traumatic thus far!

This site is very good for offloading and writing down all your thoughts. There is fantastic support and it really does help.

I didn't have counselling when Ray was alive, not my thing really, but I went for a massage at the Cancer Care Centre after he died. I'd been feeling perfectly fine, but like you, as soon as she asked how I was, I burst into tears and again like you wondered where it had come from. I guess we need more help than we think at times.

Don't forget to look after yourself too.

Julia x

[Slewis7313]

Certainly does sound like you have de eloped a well thought through, determined plan for Carl. It's just a shame the initiative you have been displaying in moving this forward could not be adopted in a joined up coherent manner by all the Doctors!

Good luck with the future treatment plan

Steve

X

[cestrian]

Just want to echo the good wishes to you and Carl. I've never had any side effects from Gemcitabine and indeed have just started another cycle today. Just shows that we are all different. Good luck with the nano knife I'm proceeding in that direction at my own rather snail-like pace!!

It really is doubly hard for those like you caring for their loved ones and wishing you could bear some of their pain for them. Believe me you do, just by being there and showing your love.

Love and Peace

Mike

[RLF]

Thanks for your replies, support and suggestions. I think the only way I can cope is by trying to take charge of the one place I can, and that's alternative therapies, diet and supplementation. I get a lot of resistance from his Dad on things I suggest, even the nanoknife procedure was talked about as if it's voodoo because its not mainstream in hospitals. I had to explain that the UK isn't ground breaking in its approach to new treatments and this was the best chance we had, but he still seemed to throw a downer on it whenever he had the chance. Sometimes I'd come home to find Carl really down, and it was always after talking to his dad. Thankfully (bit harsh this) he lives in Portugal and has gone back till the end of this month. Only problem I get with that is he now messages me all the time asking questions, the same questions over and over even if I've answered them. Oh well, thats nothing to what poor Carl is going through at the moment.

Anyway this isnt about me, this is about him and sadly he is still in hospital and still not very well. The Folfirinox has hit him so hard it's crazy. The oncologist was a bit annoyed at himself I think as Carl reacted so badly to the gemcitabine that he said he should have known he would to this too and he must be someone who is "overly sensitive to the poison" they are putting in him. He said he should have just used the stronger anti sickness meds straight away, but the same time I don't blame him for not doing it, you don't want to take meds that you don't need... but now we know!

So now its day 3 after the chemo, I've popped in to see him before work and he's asleep and very comfortable. I know he has been sick in the night as there are less sick bowls here than I left him, and there is some bile that is on the table that has seeped through the cardboard sick bowls and not been wiped up. I know its not nice talking about sick but I've never seen anything like it. His 24 hour anti-sickness syringe will be finished soon and I'm hoping he'll be home tonight if he's feeling better, though I doubt they will let him go till he's stopped being sick.

My main concern is if it is like this again next time, he'll say he doesn't want to do it any more. Which I wouldn't blame him for, but I'd be devastated as it seems to have worked quite well for people combined with other treatments. I've heard the first one is the worst one with Folfirinox? Is that right? I very much hope so!

Rob

[J_T]

Hi Rob, lovely picture of you both on Carl's story

Sorry to hear Carl is still feeling poorly but it is quite often the case that tolerance to the chemotherapy does settle down after a couple of sessions and hope this is the case for you.

The decision to continue with treatment is always very tough. Feeling absolutely awful for longer term benefit, versus a good quality of life for a shorter period but I know you will support Carl whatever he decides. He shouldn't make that decision now while he is feeling low, hopefully he will start to feel better and be more positive about his treatment.

Best to you both.

Julia x

[nikkis]

Hi Rob,

My husband Paul has just completed a course of Folfirinox, and it seems there are no hard and fast rules as to how you are after each one, it varies so much every time. Generally he felt at his worse about day 5/6. The one time he felt really rough immediately afterwards was probably due to having a reaction, but if it is any reassurance, this didn't happen again.

Did they put Carl on 3 days of steroids post chemo, I think that is usual to help with the sickness and does make a difference? We have not really found anything else helps with the sickness, so Paul just sticks it out. If he is really struggling it may be worth asking if he can come home with the syringe driver as the district nurses can normally come and change this at home, but hopefully he should start to feel better in a day or two.

Also worth remembering that a whipples is a major replumbing of the digestive system. Paul had folfirinox post surgery, and as a result the chemo has probably hit him particularly hard, but if Carl can cope it can have good results.

really hope you can get him home and he feels better soon, and the next one is easier,

Nikki

[PCUK Nurse Jeni]

Hi Rob,

So sorry to hear about Carl's reaction to folfirinox. Please do send him regards from Dianne and myself.

Folfirinox is a combination of 3 drugs, and 2 out of those 3 are pretty toxic. More toxic than Gemcitabine would be, with more side effects. However, As Nikki said, hopefully the next time round, they will make allowances for this, maybe give a reduced dose or something, but certainly alter the anti-sickness medication. Hopefully then, cycle 2 will be tolerated a bit better.

Also, you are welcome to give our contact details to Carl's dad, if he has a lot of questions, and maybe this might direct them in a different avenue, especially treatment (general questions), related.

Kind regards,

Jeni, Support Team.

[InfoForMum]

Hi Rob,

Your and Carl's story really resonates with me, not as regards the whipple, as regards your determination to seek out and move on with the best available treatments despite the protocol paralysis we see in some care givers. I'm sure he values your courage on his behalf enormously.

I echo Mark's comments ref nanoknife. Despite my mother's procedure not going entirely to plan with a newly spotted cystic mass getting in his way and a long recovery, neither she nor I have doubts it was the right choice and thankfully we also benefit from the excellent support and coverage from a good insurer.

One thing I'm going to hesitantly ask is whether he's been checked for pancreatitis. The extreme vomiting including bright green bile mirrors my mother's experience when she had it after her rather rough biopsy. It was accompanied with mid left abdominal pain that needed oramorph to control though, so perhaps not likely, but a test of amylase levels might cast light? Also, Mum found Emend (a more expensive and therefore not normally offered antiemetic) knocked her 1st cycle nausea and vomiting on the head. 1st cycle she just had domperidone (spelling doubtfull!). Comes as 3 day course. 1x125mg loading dose pill, 1x80mg for next 2 days. Mum took it by its self, but often taken with onanadestone/domperidone. Sure all has been tried so pointless, but wanted to mention.

It's so hard on the pair of you to have this kind of reaction. I'm so sorry and don't apologise for the reaction to his Dad. I have the same challenge with my mother's sister. She calls twice a day crying on the phone saying she doesn't want to lose her and in the next breath critisises us both for distrusting guidance from doctors who must know best. It's draining batteries already running low and the only rational response is to minimise contact that drains you. It's not always polite and not always socially appropriate, but it's entirely necessary.

I hope you both take great care and welcome to posting on the forum.

Sarah

XXX

[RLF]

Hi all, we are home which is great! We came back friday night and its only today that he’s really feeling better. By better I don’t mean well enough to really do anything other than get into the bath and go down to see the dogs but its an improvement at least. His appetite is back to normal and we’ve started a very clean eating lifestyle, pretty much vegan with seafood added for protein. This will be hard as we are MASSIVE meat eaters and we actually sell pulled pork wraps/baguettes as a weekend job! I made fun of my niece for going vegetarian about a month ago...and look at us now lol. We’ve both really enjoyed it so far though, and I didn't realise there was so much you can do with vegetables!

Had an email re the nanoknife, they need a lot of information to write the referral to the insurance company but I really don't know half of it so Im going to have to try and get the info from the hospital here in Leeds. I find that weird that I need to be the middle man, if I ever request X-rays or anything I do it myself I don't ask the patient to go get them, but if for some reason it’s faster then so be it. I need things like diagnosis dates, dates of surgery and radiology reports. Things I don't have access to and dates I don’t remember and haven’t written down. Hopefully someone at the hospital can help but I don’t know who to ask!

@Nikki yes they gave us steroids but I had to take him back into hospital the same evening he had the chemo ‘cos he just couldn’t keep anything down and was sweating profusely. I don’t think they gave him any steroids there but I might be wrong. I think the syringe driver was their main plan of attack. I think they are doing what you suggest and putting the syringe on the day before the chemo, so yes we’d come home with it and they could remove it chemo day. Hopefully that will help a lot.

@Jeni thanks, and I’ve suggested they ring you before about discussing the nanoknife and they said “we’ve read about it” so I just let it go. If they keep on at me I’ll insist they talk to you guys, I had another message last night asking all the same questions about the chemo they have asked 100 times over. I just want to say scroll up and read what I wrote last time! I know they don’t want to bug carl about it and I’m glad they aren’t but it gets frustrating for sure.

@Sarah no, he wasn’t checked for pancreatitis as i’m aware. I’m a bit annoyed with the hospital at the moment (for the first time as they are normally great) as they told Carl the reason he was so ill might not be the chemo, but didn’t tell him what they thought it was. When I went to get him on the Friday night I could tell when he told me that he was worried it was something cancerous that they weren’t telling him about. The stupid thing is he was 100% fine before the chemo, we had been to Prague and done a lot of sight seeing, eating out and though tired he felt fine. During chemo starts throwing up and that evening very ill...but maybe not related? Really? He could have pancreatits and maybe thats what they were thinking, but to me it seemed ridiculous to not think the poison they put in him wasn’t what made him ill. I don’t think he had Emend, just onanadestone and another drug and he is still taking those two as he is still mildly nauseous. Glad to see I'm not the only one with family problems lol. I know they care and I know being so far away is hard for them, but I think i need a pyramid style system of information transfer as I just get bombarded all the time from all different angles.

Rob

x

[Cathy]

Hi Rob

I don't have any advice over and above what the others have said other than when my partner, Jonathan, started folfironox last Feb I used to keep a diary of chemo side effects which I found really helped. I think the first cycle is tough as you just don't know how you will react to the chemo. Hopefully knowing what the side effects are will help with managing them in future.

Good that he is home though.

Cathy

Xxxx

[J_T]

Good to hear Carl is home and his appetite has improved. Good luck with further sessions.

Julia x

[AnneK]

Hi Rob

So sorry to hear Carl's story and he is certainly lucky to have you fighting his corner. All I can add is that I too had a really bad reaction to the first cycle of Folfirinox and ended up in hospital for over a week as a result - mainly to treat the fatigue, nausea and diarrhoea that left me completely drained and needing drips and blood. Since then I have had 7 more cycles - they removed the Irinotecan element as this is known to cause bad diarrhoea and they also reduced the dose of the two remaining elements. I still have diarrhoea and nausea but treat this with steroids (dexamethasone 2mg over 6 days reducing from 3 per day to 1 per day), ondansetron and levomapromazine. I have not had a whipples operation so I don't know how much of a factor that is for Carl.

I really hope that things improve over the next few days and that Carl can get stronger before the next cycle. Do talk to his Macmillan nurse as they are very good at helping to manage symptoms. As you have already seen, Jeni and Dianne at PCUK are also incredible and a great source of advice.

Good luck with everything, will be thinking of you.

[RLF]

Thank you guys for your info and support. Things went from good to bad again, this time with problems the other end! So back into hospital we went on Tuesday and he came out again last night (Thursday), they changed his diarrhoea medication and that seems to have fixed it at least but he really can't seem to catch a break at the moment! To think it all starts again on tuesday is not something either of us are looking forward to, but I have hope that things go a lot better second time around. That's all you can have I guess!

Sent the info needed to London for the nanoknife, so hopefully that will go ahead as initially pencilled in on the 5th of Feb. Fingers crossed anyway, because if it works it'll cut this chemo off to just 3months which we will both be very happy about!

Hopefully going to bournemouth to see my family this weekend, we have a family portrait to take...oh dear...but we'll have to see if he's up to it or not. Not going to let him to do anything at the moment that will throw him backwards.

[Sones]

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]

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

[RLF]

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 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]

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]

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]

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]

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]

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/viewtopic.php?f=28&t=1168&start=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

Edited February 7, 2014 by InfoForMum

[RLF]

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]

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