Page 1 of 27

Carls story

Posted: Wed Jan 15, 2014 2:52 pm
by 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 ... rable/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.

Re: Carls story

Posted: Wed Jan 15, 2014 3:30 pm
by MSH
Sounds like a good plan. I hope Carl is able to tolerate the Folfirinox and wish him well with the Nanoknife.

Re: Carls story

Posted: Wed Jan 15, 2014 5:42 pm
by 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

Re: Carls story

Posted: Wed Jan 15, 2014 6:26 pm
by 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


Re: Carls story

Posted: Wed Jan 15, 2014 8:16 pm
by 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


Re: Carls story

Posted: Thu Jan 16, 2014 12:00 pm
by 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!


Re: Carls story

Posted: Thu Jan 16, 2014 12:54 pm
by 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

Re: Carls story

Posted: Thu Jan 16, 2014 1:09 pm
by 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,


Re: Carls story

Posted: Fri Jan 17, 2014 11:44 am
by 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.

Re: Carls story

Posted: Sat Jan 18, 2014 12:14 am
by 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.


Re: Carls story

Posted: Sun Jan 19, 2014 2:34 pm
by 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.


Re: Carls story

Posted: Mon Jan 20, 2014 10:54 am
by 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.



Re: Carls story

Posted: Mon Jan 20, 2014 12:44 pm
by J_T
Good to hear Carl is home and his appetite has improved. Good luck with further sessions.

Julia x

Re: Carls story

Posted: Mon Jan 20, 2014 1:43 pm
by 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.

Re: Carls story

Posted: Fri Jan 24, 2014 11:22 am
by 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.