Planning Chemo in Prep for Surgery

Ladies and gents, you're great,

Cathy, I have to admit, once I'd got past the disappointment on your behalf about the hard time Jonathan had, I laughed out loud at the wheelchair incident (complete with shouted expletive) and the Quality Street brain burp. I hope the scan has good news an re enzyme replacements, they helped my mum a lot almost straight away and Jeni's advice on how to take them (not randomly 3 times a day, but just before meals) and confirmation there was no toxic dose and few side effects helped so much.

In terms of humour yours is very much like my like my clan. It's cathartic and don't stop sharing! Just yesterday Mum said "I think I'm going to behave quite badly at some point". I reassured her that if she meant screaming at the world, screaming at me or having a good sob, that was fine, but if she meant punching pensioners or running down the high street naked I might have to draw the line. Mind you if I thought that would help I'd probably just get some good legal representation and suggest she got on with it.

As for the challenges of working and helping someone, well that's yet to really be seen for me isn't it. I'm far less far down the road than you utter warrior women. I hope I have half your strength.

Also, your reassuring Cathy about posting good stuff has helped me too. Have felt concerned at times I'm dramatically posting about a situation which is on the whole better than the vast majority of folk. Thank you.

Bee, Julia, you probably realise it can sometimes mean a lot just to have the work and emotion put into this acknowledged, so thank you again. Basically, it's hard and I expect it to be brutally hard soon, but it is what it is and we cope don't we. We love them and would have no-one else do the job. My Mum is an inspiring example of that. She nursed her Mum at home thru end stage cancer aged 17, then bore the brunt of my Dads rapid decline and death after prostate cancer surgery 10 years ago and more recently has bullied social services into providing great domiciliary care to keep my elderly aunt and uncle at home while filling in the gaps between support visits herself (he has heart failure and she has COPD plus bladder cancer). She's taking being the patient very hard, but I'm doing all I can to persuade her it's ok an I'm here if she falls.

Having folk like you around to understand without me having to explain and to let me have the odd pressure release rant is and will make all the difference.

Hope you're all taking your own excellent advice and taking care of yourselves too.

Sarah

XXX

Still some Quality Street left if anyone wants one.... No purple ones tho!

Jonathan was up a bit in the night with a sore tummy which I'm sure was lamb bhuna related - its gone now so fingers crossed that's all it was. Maybe that curry wasn't such a great idea after all...

Have a lovely Sunday everyone.

Xx

Hi Ladies,

Have not posted again for a while due to recent events. So sorry to hear of your car crash Sarah, "it never rains but pours" springs to mind! Keeping fingers crossed for Jonathons next scan Cathy and please never feel bad about posting how well he is doing. Pleased Bee had good holidays and have taken note of that insurance company. Julia...hope things are ok with you.

Bob is currently still in hospital. Been there 2 weeks now having been transferred from our local hospital who failed to insert a stent to the hospital in Cambridge where we have received all treatment. He had the procedure on Friday and ended up with both a stent and a temporary drain to the liver which is draining vast amounts of bile. Hopefully they will remove drainage bag on Tuesday and discharge Wednesday although they plan to keep the temporary drain in for 3 months covered with a dressing. Pain still not controlled and although he doesn't look quite so "simpson" like he is still bloody itching. Has questran prescribed but the only thing that really helps is a cream called Dermacool. He's draining around a litre of bile every 24 hours....I was wondering how much we normally excrete or is it just because it had built up? Anyway we can not praise xx highly enough and are pleased we opted for care there. Just a shame how far away from us it is. Hopefully he will be discussed at MDT tomorrow and we will know more.

Hi,

Oh Karen, sorry to hear things are still difficult, but fingers crossed Bob is now in the right place and he will start to improve now the stent and drain are in place. I am not sure but from my distant memory I think we do produce a lot of bile every day but I think so rather than know so!

I hope you are managing to look after yourself in all of this to and certainly not attempting to work as well!

Keep us posted, take care,

Bee xx

Hi Karen

Reflecting what Bee has already said I'm sorry to hear that Bob is still poorly. it seems so unfair when he has responded so well to treatment otherwise and was doing so well. I'm sure the hospital would say if they were concerned abut the amount of bile being drained? A friend's partner (who has prostrate cancer) is treated at Adenbrooks and I know they are pleased with the care that he gets there.

It will be good for him to get back home to you so fingers crossed he feels well enough for Weds and continues to improve here on in! I assume you will be having district nurses (or Macmillan's) popping in when he gets home?

Take care Karen and I do hope Bob feels better very very soon

Cathy xx

Thank you all for your kind words and just a quick update. Today Bob appears to be perking up again. Pain seems to be resolving and they talk of removing the biliary drain this evening so obviously we do all produce that amount of bile. He has been up and about, hopefully will be discharged Wednesday and Cathy I don't think district nurses will be required as he says he will be going back to work on Thursday! We have a weekend in London booked this weekend which I wanted to cancel but he refuses too. He is a very strong willed man and has no intention of letting this get the better of him.

Sorry Bee but I did go to work today! Knew Bob was ok so left him in the good hands of our neighbour and our son for the visiting hours and escaped to work. Can't say my mind was on the job but it was a welcome distraction. My lovely brother and sister in law are visiting him tomorrow from Cardiff bless them which is just miles away so work looms again for me tomorrow.

Take care everyone

Karen

Hi Karen

Well your Bob sounds like a right trooper doesn't he? Strong willed men eh (tssk)

I hope he manages to find time to rest as well, and you!

Have a lovely time with your brother and sister in law.

Cathy xx

Just catching up after some hectic days and great to hear that news Karen! I hope the stent makes the same difference for him as it has for my Mum. He does sound incredibly strong deciding to get back to work and hope your break is a as good as hoped.

Generally Mum is considerably better. Itching much better, rash sorting it's self out and bilirubin decreased from 277 on 13th Aug to 207 on 27th Aug, but bloods today showed it as 88!!!! Jeni suggested initially very slow progress and apparent increase in symptoms immediately post stent may have been to do with some backed up "sludge" clearing through. Looks like that may have been the case. Seems like her progress has increased as she's gained strength generally.

Not just that, she's had her endoscopic ultrasound guided biopsy and as bizzare as this may sound, she was pleased to finally have a positive diagnosis. A negative diagnosis would have flown in the face of all previous findings and would have led to uncertainty and more testing before any treatment could start, so all things considered it at least clarifies things. A true positive is that an additional CT of the rest of her lungs (not part of orignal CT) confirms that it's local and our consultants MDT agreed with his diagnosis of it being rescectable, so all is now poised to start chemo locally to halt/shrink the thing in prep for surgery.

So, we have reached the end of the start. Now my Mum is getting her head round 3 months of FOLFIRNOX twice a week followed by 6 weeks of chemo/radiotherapy 5 days per week. Her London consultant is speaking to our local specialist oncologist (yes we found one, but havne't met him yet) about starting that. Maybe as early as next week.

Feeling elated at having found mum a surgeon who will operate and who she and I both trust and her still being in a fit state for the fight above. She and I are probably going to rest all day tomorrow, then I'm probably going to be asking you wonderful folk again for advice about planning for, treating symptoms for and living with that run of hard chemo.

Very, very conscious that Mum is one of the lucky minority with surgery being an option (while not forgetting things can and often do change despite getting the best treatment given the aggressive nature of this nasty disease). Despite your kind assurances that it's OK to share good news, I want to stay mindful of the harder fight many of you are facing, so please forgive me if my tone or update causes any upset.

Shamefully I haven't been on to check how you are all doing, so I hope there have been good days, no bad surprises and will check back in soon.

Sarah

XXX

Hi Sarah - lovely to hear some good news and as I'm always saying never be afraid to post good news. Is mum going to the same hospital as us?

We have not made London or work! Bob is still in hospital as an infection appears to have set in but unsure as to where. Pain is not controlled even though having large amounts of analgesia. I'm wondering whether he should have a PCA for now. It seems to be every evening this occurs. Yesterday we had a lovely afternoon, walked round the hospital, got his hair cut then at 6pm temp shot up over 39 and in horrendous pain. They are wondering whether its his appendix ( surely he cant be that unlucky! ) as blood results re bilirubin down to 66 and liver function good so they don't think the infection is in the stent or biliary drain. He's called me this morning in pain again so I called the ward who said he had a really bad night ( screaming with pain ) but thought he was a bit better this morning! They are waiting for the pain team and the surgical team to assess. I suggested perhaps they should liaise with the oncology team too as to me they are just looking at the problem from a surgical point of view. That did not go down too well so I am waiting for the oncology team to start and will call them myself. Have also got the specialist nurse on board. Any other suggestions welcome please.

I just want him home so I can look after him

That sounds awful Karen. Watching or hearing about someone you love in pain has got to be one of the worst parts of this. Well done for trying to keep them joined up. Sounded totally sensible to me. Hope the call with oncology helped as presumably your doc/nurse there knows more about his all round situation and state of current health than anyone.

I think we'll be in Norwich for chemo, just to be as close to home as possible. Having said that, not sure how referral and relationship with local chap will be. They've got one oncologist on the team off (not back from mat leave til April next year) and we rocked the boat with our local physician, by going round the local specialist centre MDT, so hopefully that won't have any knock on for how things go with this oncologist.

Let me know how you and he go. Will put through my nbr by personal mail if you a chat would help as I'm at home today.

Sarah

Hi Sarah

Great news about your Mum!! I know nothing is certain but you have very good reason to feel very positive about beating the thing. Please do ask whenever you want about FOLFIRONOX - between us we have a fair bit of experience (which I'm sure you will already have gathered from our threads).

Karen - I cannot believe it!!!!! How unlucky is poor Bob? I'm very surprised that they aren't able to identify why he is in pain (tho I'm no medical expert) but it seems to me you have done the right thing in getting the oncologists involved - even if that is just to rule things out. We're thinking of you both and have EVERYTHING crossed that they can get to the source of the problem and sort it!!

Lots of love

Cathy xx

Hi Sarah, glad to hear everything is in place for your mum's treatment. Is she really having Folfirinox twice a week? Or do you mean every two weeks? It would be extremely tough the other way around! Hope everything goes according to plan and she tolerates it well.

Karen: words fail me, they really do. When you are constantly told that there is no need to have pain or discomfort and this can be kept under control these days, its a bit scarey to hear that Bob is in HOSPITAL and they don't seem to be able to manage it. It's worrying. I sincerely hope that the oncology team get a grasp of his care and sort this out pronto! You must be so angry

Julia x

Getting a bit scared now. He definitely said twice a week :-S. He IS a surgeon and we haven't spoken to one oncologist yet and the local oncologist will have the call on the regime/dosage/frequency.

Damn...foundering. She's low today as sadly shes had lots of chest pain for 3 days since the EUS. Sounds like textbook pancreatic pain (upper abdo, circling round to back on right side). Bit consistent for 3 days, waiting and seeing til tomorrow then off to A&E. Cos of choices made we're cut a drift some - don't have a doc here to fight our corner until onco on point and still don't know if onco will sign up to liaising with London.

Worried about Karen and Bob. If you're back on let us know how he's doing K.

Sarah

X

I think it might be that folfirinox is given over a couple of days, ie an infusion one day then home with a pump that is removed after 46 hours. Its usually fortnightly though.

Julia

Hi Sarah,

Fingers crossed your mum perks up a bit and you get some of your questions answered soon, so battle can commence. Fingers crossed!

Karen, so sorry to hear you are having a hard time and the hospital seem unable to manage Bobs pain. Hopefully as you say the oncology team can help, rather than as you say just a simple surgical approach. It's incredible with all the research and expertise available that pain is still uncontrolled. But keep fighting and say what you think, aren' t we notorious for that as a profession ?(!). Sending a big hug, keep us posted, sending virtual chocolate and wine!

Bee xx

Many thanks Bee. She called to say things were better this morning. Said the 'quality' of the pain was getting more like an itch which tells her it's mending. On the other hand she might be stalling me as she hates the idea of A&E so much (she's camped there too often with the ill elderly sister and brother and law she helps care for). Hope it's the former.

I've been harvesting lots of information from all of your FOLFIRINOX posts (there's lots of exactly the kind of info I need)and putting myself a crib sheet together. It's not going to be twice a week is it. Read info from NCCN, 2 x american trials and lots on here and then emailled her London consultant to ask flat out. His english is fab, but turns of phrase like "twice a week" versus "every 2 weeks" could have got lost in translation.

Downside of looking at studies is re-discovering how many don't get to surgery even starting where we are, or do, but get fairly quick recurrence or spread and how that stacks up prognosis-wise. I'm basically a bit down again. She hasn't had time to draw breath let alone properly look at the cost/benefit of hard chemo, hard surgery and what that could buy her vs what she's sacrificed if it doesn't work. Probably sound like an ungrateful stupid cow. Don't get me wrong, it's a no-brainer, but I know she needs to make fully informed choices right now because of how harsh this will be. Think I'm just having another shock at how horrid overall this thing is. It's all hope with half a hundred weight of caveats isn't it.

None of this moaning will make it's way back to Mum, and sorry to dump it on you folk! Need to put my sensible head back on and remember that medical stats are about medians and means, ignoring the unique life, body and mind behind every fraction of a % in a chart. Hard not to get overwhelmed trying to work out implications of the latest change/symptom/option and impossible not to without the real-life perspective you guys share. Bugger all the stats on morbidity, mortality, RR, PFS and OS! Sod the median prognosis. Working to focus back in on my Mum's real life today and for the next few weeks. Rant over.

Every time I fall down a black hole of what ifs, this site is like a ladder lowered down. So glad you're all here and so generous with your time.

Sarah

XX

Sarah,

You have hit the nail on the head I think.

We were told very clearly on diagnosis (my husband, isolated to pancreas but inoperable), that there are no definites. The disease progresses differently in everyone and responds to treatment differently. Statistics are only an average, and very fluid. Our whole life is focused on one or two months at a time, I would drive myself crazy if I went through all the possibles, ifs and buts. So we deal only in what is hard fact and what is happening now, and for the rest of it we live for now, whatever time we I have left I will not ruin by worrying about the future. It is the hardest thing to cope with but there is no choice, the bad days and times are there but I keep pushing them back and refuse to let the terror take over! For me it's all I can do.

You are right this site is a lifeline and I am always reading posts.

Good luck and enjoy the weekend

Bee x

Thanks for that Bee. Glad I'm at least making sense. Everytime that panic puts it's nasty fingers round the crack in the door I'm slamming it closed, as is Mum. We're still working on the right "dose" of info about this, so as not to overwhelm and feed that beast.

And it's not twice a week! Either him getting it wrong or me getting it wrong. Either way it's great he took time to mail today (feel we must have a good one if he's mailing at 10am on a Saturday!).

Thanks for heads up on that error. That news will cheer mum up no end.

I haven't heard from Karen, so was wondering if anyone else has? Prob not surprising being the weekend and everything she's prob dealing with. Sending best wishes anyway.

Sarah

Hi Bee, your description of how you are dealing with things is exactly the same for me too! Seems to working so far!

Sarah, glad you got the Folfirinox regime sorted, I was a bit concerned there for a while!

x

Hi Ladies,

I'm still here, still reading your posts, still thinking of you all - just not much time to post myself. Sarah I'm so pleased you seem to have got the folfirinox sorted out - twice weekly would have been far too much! Keep fighting for your mum and try not to focus on statistics as we are all individuals and react differently.

I have to say I am just exhausted at present as Bob STILL in hospital and I think that my current regime of working in the morning then driving around 3 hours in total to see him, fighting to get medication sorted and ON TIME then home to make tea around 9.30pm -is beginning to wear me out. Yesterday his pain appeared to have improved but temperature still spiking.I still don't think they've got his medication right. He's taking oxycontin, oxynorm,buscopan and paracetamol some of which to me seem too close together so he has moments when he just crashes. He insisted we walk to Costa yesterday and was nearly face down in his cappucino! They tried putting a drainage bag to the external drain to see if that was the problem but no drainage which is a good sign as the stent is obviously coping. He's looking less canary like by the day ( another good sign ). I think I need to make a decision about work - perhaps take leave this week then see. If he comes home this week he will need me around as so weak although according to him if he comes home this week he's going back to work!

Right well I now need to get ready and head to Norwich to get his mobile looked at ( not working and he wants it for work next week! ) then head to Cambridge.

Thank you for all your support and love the virtual wine and chocolate Bee. Your right Bee in that our profession we are good at questioning and standing up for our rights but I'm getting tired. Need to get back in angry mode!

Take care everyone and hope you enjoy your Sunday

Karen xxx

Hi Karen

So sorry to hear Bob still in hospital,and amazed to hear he still wants to be back at work soon,a true fighter!

Also I am in awe of you still working ,again a true fighter!

But now you need to take some time for yourself,I found it was important for me to keep myself well to cope with Micks chemo etc as well as the psychological side.But everyone is different,I have a friend whose husband has been diagnosed with terminal cancer and she has only dropped one day of work,she says she an be herself at work and gives her some routine.

We both have made some difficult decisions lately.....Mick is retiring officially at the end of October on grounds of ill health and I've resigned from my job too.Work have always been fantastic with me but we don't know what's round the corner(but who does?) so we want to enjoy our lives as much as possible whilst Mick is well(he had a clear scan result last week after a slight scare when his ca 19-9 went up slightly but appeared to be a blip as come back down)

Hope Bob improves enough to be discharged soon,look after yourself Karen,put those feet up with some chocs and a large glass of vino!!!

Sue

Xx

Karen, I am not surprised you are exhausted, anyone would be and none of us are superhuman (shame!)

It is so difficult to juggle all the balls , and there is a balance between maintaining normality and cutting yourself some slack. It does sound like you need to put work in the background and look after YOU. I am sure if you put your professional head on you would advise yourself the same.

At least it sounds like the stent is working, small steps climb big mountains ! As you say Bob will need you at home when he is discharged ( well after he has been to work of course, lol!).

Take care,

Bee xx

Hi there all

Karen - I hope this week shows steady improvement in Bob. Good he is less "canary like" I also think you should do as you suggest and and book yourself some leave - just your travelling time alone is exhausing without the anxiety of Bob and fitting in a job. As Sue says - sometimes work can provide a routine (and in my case, normality) which can be helpful but we can't do everything. After all the last thing you need is for you to become exhausted and poorly.

Sue - Great news that Mick continues to be well and hopefully you will have lots of exciting times ahead with your new lives away from work.

Sarah - hope your Mum's doing ok? Glad you got the folfironox query resolved. Once treatment started I found making a diary of side effects when Jonathan started really helpful to act firstly as an aide memoire for seeng the Oncs and also to help us spot any patterns (e.g. feels fatigued generally X days after bottle removed). We got the district nurses to show us how to flush the picc line & remove the bottle ourselves so we had some independence from nurses outside of hospital which you might want to consider tho your Mum might struggle to flush her picc line on her own - really it takes another pair of hands.

Bee - great idea re virtual wine and chocs - all the comfort, none of the calories! A patent is needed I think!! I can see it on Dragons Den already.

xx

Cathy,

I would not be a good advert for this patent, I think I have gained about a stone and a half since diagnosis, if I claimed "none of the calories" they would laugh me off the show, lol!!

Hope everyone has had a good start to the week!

Bee xx

Hi Ladies,

Hard day or two. Mum's in hospital with pancreatitis, blood clot in abdomen, swollen gall bladder and suspected infection linked to one or more of the above. Looks like fallout from rough biopsy rather than anything else. From A&E admission (6pm ish yesterday) to diagnosis took 10 hours despite me telling them what it most likely was, as first bloods lost. She's very, very sore mid left of abdomen (can't walk, breath, turn, or sit without horrid pain and aches in between) and nauseous whenever she tries to eat. Now on oramorph and has had metronizadole and Gentamicin antibiotics in a drip this PM. Confused advice about eating. Med student said nil by mouth, fluid drip, registrar said jugs of water and measure output, consultant said "drink as much as you can and eat something if you fancy it". She's treading a middle line as her blood sugar went v low. Eating stuff she knows she doesn't need creon for based on the theory that would stress her pancreas least. Who knows what's best.

No onc yet so no-one fully on-side here. Local consultant who we fell out with over London referal has helped out (did some uber creeping and ego stroking). One worry is they've never repeated the admission bloods and I'm scared they'll miss an impact of pancreatitis on organ function. Should I be worried. How long does pancreatitis take to resolve, should she be in oramorph level pain (bearing in mind I've only ever seen her take paracetamol for ANY kind of pain and that's once in a blue moon).

Karen, glad to have an update and sorry Bob is still suffering. Feel for you so much. Sounds like, in your heart of hearts, you know the answer to your question about work. Follow your instincts and give your self a chance to get things sorted, get out with me for a coffee? Sleep between visits until he comes home maybe?

Sue, hope your decision felt as right as it sounds once it was made. I tend to find that...bloody hard to make such a big decision, but when it's made you know. My mum joked when Dad retired that he'd better flipping keep himself busy cos she married him for better and worse, but not necessarily for breakfast, lunch and tea. Think this kind of situe puts a new perspective on that! Good luck with everything.

Love to all as always

Sarah