She's gone

About this thread - the title here changes to reflect the latest post, but this whole thread starts the week before FOLFIRINOX. At this point the tumour is classed as borderline rescectable, so the expectation is chemo (6 cycles), chemoradiotherapy (5 days p.w for 6 weeks), then, if still feasible, surgery.

FYI - Borderline Resectable Tumours and Pre-surgery Chemo and/or Chemo Radiotherapy - The followng study goes into depth with the reponse rates for locally advanced borderline-resectable cancer and pre-surgery chemo and/or chemo radiotherapy. http://annonc.oxfordjournals.org/content/early/2013/07/11/annonc.mdt239.full - You would need to wade through medicalese to read it if you can manage that, or maybe ask the nurses to interpret. These are the usual averages, medians and stats that hide the real story of the people going through this and findings might have been replaced by more recent studies, so please just treat as some extra info for any other borderline resectable folks coming across the thread.

Hi All,

Moving on from posting in the Diagnosis forum to the Patient Experience forum. That alone makes this feel more real. Posting as the name suggests on behalf of my Mum. She is starting chemo next week or the week after (FOLFIRINOX) and we are lucky enough to have the option to get a port-a-cath fitted if it's appropriate. Will of course be talking to her new oncologist, but always try to got to these things well informed. The main potential problem I've seen is leakage with the 48hr portable 5fu pump at home. Is this an issue?

Any experience here on pros and cons of that or on your reactions to the first cycle of FOLFIRINOX? Mum has braced herself for bad effects, but hasn't gone into specifics beyond generalisms (digestive, immune system, taste, sensation in extremitites etc). I know everyone is different, but the real life perspective on here beats the lists of symptoms in leaflets and scribbled down in consultations.

BTW, Mum's story to date is here if you're interested

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137

Take care all

Sarah

Hi Sarah,

Ray had a PICC line in his arm and had no problems with it at all. No leakage from the pump either. We did have one occasion when some of the 5FU was left at removal, we think due to occluding the line during sleep.

Ray felt quite poorly after first and second cycles (less so after second) but saying that his symptoms, compared to others, were minimal. He had retching but no constipation or diarrohea, no neuropathy, a weensy bit of dysarthria which was sorted with a reduction of dose of oxaliplatin. The worst side effect for him was the fatigue.

Following cycles were tolerated well but fatigue has been a constant unfortunately.

Good luck with it all.

Julia x

Hi Sarah

I think you will find everyone is slightly different. Jonathan also has (still has) a picc line and we also experienced no probs with the 5-fu bottle at all. He was given a belt to hold it and kept this on in bed and had no problems sleeping with it on although some people keep the bottle on the bedside instead. Whatever suits best really. It's easier to bath than shower as the bottle can be placed on the side of the bath.

First session - Jonathan reacted (stomach cramp) to the irinotecan and in subsequent sessions this was given more slowly and he had no further problems with it. He also had a bigger dose of atropine pain killer (TIP - he asked for this to be injected into his tummy as this made it far less stingy). The most immediate side effect was tinglyness in his fingers which was made worse as it was so cold (this was winter) - once he was warm it subsided. He also had a (small) laryngeal spasm, again caused by the cold weather and this only happened on 1 or 2 other occassions throughout.

He did not get nausious (in fact the oppostite - he had a great appetite). The first cycle he experienced diahorea but did not get this again in further cycles (it was probably a tummy bug). Overall, as Julia said, the biggest issue at the time for Jonathan was fatigue and this started on the Sunday (after being disconnected from 5-fu on the Friday) and lasted about 5 days but worst on the Monday, steadily improving over the week.

The main issue for him now he's no longer on it is the continued tinglyness and numbness in fingers and feet.

He took steroids on the Fri - Sunday so we tried experimenting taking them over a longer period which helped the fatigue dip a lot but a side effect was that he developed high blood sugar (and needed insulin for a while) and also some muscle wastage in his arms and thighs (now he's stopped them these side effects have gone).

Julia's thread "Folfironox started on Weds and other stuff" is probably a good thread to read about discussions about side effects (and a lot of other stuff )

Good luck - hope this helps.

Cathy xx

PS: will look out for your email.

Hi Sarah: Cathy, I believe, is correct in that the reactions will differ with the patient. I have a PICC line in my left arm and had absolutely no problems with it through five treatments. I wore the pump in a fanny pack slung from my shoulder and brought into bed with me at nights. Sleeping with it was no problem as it was very quiet and, unless one rolled over the tubing whilst asleep, usually not a problem in any way. Bathing was limited for the two plus days it was in place.

Side effects will vary with the patient but the ones listed in the responses to your post are quite common in my understanding.

My best thought to your and yours. Cheers, Mike

Cathy, Mike, Julia,

Thanks so much for taking the time to reply. I will go back over your posts Julia as you kindly gave so much useful info, as did you Mike and you Cathy.

Mum's kind of punch drunk after signing the consent form today. They are recommending a modified regime without the 5fu bolus as they're saying it's not standard for them now because of the extra toxicity and they have studies saying outcomes don't vary much with/without bolus anyway. I have to wonder whether those studies are dealing with neo-adjuvant chemo for surgery rather for palliative treatment where I'm assuming it is immensely important to ensure you can withstand the regime over a long period.

So many new questions.

Still looking into the portacath vs PICC line discussion. Only an option as she's lucky enough to have private insurance and as she's not phased by the idea of having to go through the skin to access it each time. Given that advantages in terms of less frequent flushing, some infection risk reduction and just basic discreteness are currently winning out as potentially concerns about use with pump have been assuaged by the oncologist.

One horribly hilarious issue is that there are NO I repeat NO district nurses in the area where Mum lives that will disconnect and flush a PICC line or portacath, so she's into a 20mile round trip and wait at hospital after every treatment.

Tiny molehills of worries compared to most on here and compared to genning up an helping her prepare for the chemo fall out, but as usually all have to be quick decisions an most can't be changed once made.

I think some of our politicians, bank CEOs and medical senior managers should be learning some lessons from the incredible patients and carers on here. Could they gather and stuff this much knowledge into their heads under immense life threatening pressure an make quick good decisions. You'd hope so, but evidence recently suggests, they could learn so much from a number of you folk!

Sarah

XX

Sarah, re the district nurses, initially we were told the same. The chemo nurses were horrified as they said its the easiest thing in the world to do. They contacted our GP as did we as, like you, it would have meant along, long journey for a five minute procedure. Turns out the DNs were trained and available and they have been brilliant. If it is in fact the case for you, I would suggest bending the GPs ear and having a word with your mum's MP. It's would be farcical if nothing could be done to correct this massive gap in patient care.

Good luck.

Hi Sarah

I'm not suggesting that this might be appropriate for your Mum but if it WAS going to entail a long trip each time (which hopefully it wouldn't) flushing a picc line is incredibly simple. The DN showed me how to do it (and disconnect the chemo bottle) on her first visit and so I generaly did that myself. This was so we could have as much freedom away from the hospital as posible and allow us to go away if we wanted to (so, for example, we went away to Greece for a fortnight with Jonathan's flush stuff).

It's very fiddly to do it to yourself though - it really takes 2 and even if you did do it yourself you'd still want access to DNs who can visit.

Incidentally, we don't have Macmillan's in our area - I'd always assumed they were a given.

xx

Julia, Cathy,

Thanks for responding. I'm very low at the moment. The nursing team at both the NHS and private hospitals in the regional centre won't work with a portacath so instead of a PICC line have recommended a central line in her chest (a Hickman or Groshong). That was a blow although she does feel thats a compromise as a she thinks a PICC line with her lifestyle would be awkward, especially with a big german shepherd that will put paws up all the time.

The district nursing issue is still the same. You will enjoy the feedback from the main hospital "we train district nurses who want to learn and who are confident with doing the procedure once taught, but we can't force them to get trained". So still into a 20mile round trip for pump disconnection. For line flushing, I can get taught, but the chemo centre are not willing to let me deal with pump disconnection due to chemo drugs being involved. Yet to be seen if I can persuade the local hospital, who will actually do the disconnection to teach me.

So routine looks like it's going to be 4hr round trip to see consultant at clinic on a friday and get bloods done, 4 hour round trip with whole day there for chemo on a mon/tues or wed, 25 mile round trip 48 hours later to get pump disconnected, possibly adding another round trip to get bloods done a different day.

All down to lack of familiarity with FOLFIRINOX in local hospital (a well respected teaching hospital with good oncology dept, not teeny rural one) leading to refusal to administer and lack of nurses trained/willing to be trained in pump removal.

Isn't the flipping thing hard enough! Feel like I'm letting Mum down. I know it's the system letting us down, but that's not how it feels.

Sarah

Hi Sarah

You aren't letting your Mum down of course, but how frustrating. Yes, do see if your hospital would be happy to show you what do do. I only have experience of disconnecting the chemo bottle from a Picc line but it is incredibly simple and quick to do. We just then had to double bag the bottle and take it in with us the next time (and even when the DNs did this, they left the bottle with us for us to take in the next time).

I wonder if it might be possible for you to have bloods done more locally to save that last round trip?

Cathy

Thanks for the sympathy Cathy,

I have picked myself up thanks to you guys reassuring me I'm not asking for the impossible! Have spoken to just about everyone to do with district nursing in our area today, but still no joy. May have to move her 20 odd miles up the road to where Karen lives cos her district nurses can and do help, but we're not in their catchment area.

Ended up doing some lateral thinking and have found out there is a private nursing company who could help. Would just need a referral from our consultant, so working on that at the moment. If our local DNs are this unresponsive it felt like the only option and thank goodness she is lucky enough to have an option. Any little thing I can do to avoid more disruption to her life and being dragged around the county I will do, so fingers crossed this can get sorted.

Line insertion now looks to be happening Monday, chemo Thursday. MRI that was to happen monday has been bumped as radiologists had to be herded at short notice to do line in time. Many folks have pulled out the stops for us and for that I'm very grateful.

Going to make time to catch up with all of your situations, so forgive me for being so selfish today.

Sarah

XX

Hi Sarah,

On the occasion my husband Paul managed to have his chemo as an outpatient (he has spent a lot of time in hospital!), we had a nurse from an agency come and disconnect the chemo. She was great, rung up before and came when she said she would. She even rung me the next day to see if we were ok. So would definitely consider this option.

On the district nurse front we had a battle getting someone to come out and dress Paul's wound when he went home after surgery. They insisted he could go to the GP's every day. We asked to speak to the manager and she said someone would come out for a couple of days, but once they came and saw Paul's needs they continued to come. You have to fight for everything which is just so stressful and so wrong,

Hope you can get it sorted,

Nikki

Thank you for that m'dear. Sorry you had a similar hard time. I had a pretty bad tantrum about it today at one district nursing co-ordinator. When she reiterated that nurses who don't want to be trained can't be trained I childishly snapped that Mum doesn't want to have pancreatic cancer and drag herself round the county while dealing with chemo, but she doesn't have any choice. Perhaps a teensy bit sarcastic, not entirely fair and somewhat prompted by stress, but really stuck in my craw.

I must also add, based on many other conversations, most folk have dealt with great DN teams. We just seem to have fallen between some rural cracks in the system. Something I will write a note to my MP about.

You have made me more confident to fight about this and your experience with an agency nurse also encourages me I'm going the right way if the fight can't be won, so thanks again!

Take care Nikki

Sarah

XX

BRIEF update,

I did mail her MP last night at 1am (don't ask). Got a reply at 9am saying he wants permission to take up her case!! Given that Mum has a private alternative I'm not sure hers is the best case to take up, but if there are other patients in or around our area (moderators can let you know where that is). Please contact me (again moderators have my address) and if you are willing, I will pass your details on.

Sarah

XX

Great stuff Sarah. Thing is, just because you have access to private care doesnt mean you should have to. As you say, others in the area would benefit and I'd seriously consider letting your MP act on your behalf, even though at this stage you are still going to have to use resourcs from the private sector.

Cheers Julia,

Mum's given her permission to have him pursue this. Turns out the local DN team do not deal with any intravenous line care for whatever reason. That' is going to affect folk far more widely than our PC world and if local teams can make unilateral decisions about the nursing care they do and don't provide I suspect this won't be the only less common nursing requirement people will be refused. Will wait and see the outcome.

Thanks for being my cheering squad!

Sarah

XX

So on to the next thing. Mum's line on Monday (doing separate subjects cos I think it might help folk find relevant stuff easier - not sure). This is going to be the first visible change to her body, with the exception of moderate weight loss, since this started. I've shown her, at her request, a YouTube vid of someone flushing their own Hickman line so she gets a feel for how this is going to be/look/feel. I'm not sure, and hope I'm wrong, but think this bit might upset her. She commented today that this feels like the start of her body not quite being her own for a good long while.

This may sound trivial to some, but I suspect others will get it. She's got her usual game face on, even talking to contacts we have who can help with tattoo eyebrows, semi-permanent eyelashes and good wigs in case of need, but it's not real til it's really real is it. We know that's a small corner of the bigger challenge, so please don't think we're ignoring the bigger fights going on for others.

The rebooked MRI is the Wednesday locally, then on to the main event next week. First FOLFIRINOX. That's the biggie in a week of biggies. Week after next will be the biggest biggie so far, the MRI result to find out what those 2 teeny liver lesions most likely are.

Sarah

X

Sorry Sarah but I have only just seen your post about contacting the MP - well done girl! Paul has had 3 lots of Folfirinox now, we was told that his hair may thin but not fall out and that has been the case. He hasn't been to the barbers, just a quick trim at home so as a result he has very bushy eyebrows! Hope its the same for your Mum (though obviously not the bushy bit!),

Nikki

Lol Nikki, thoughtful post, thanks! Mum and I only recently commented that one sign of getting older was having to attack your eyebrows with hairdressing scissors as well as the tweezers. May just be us...who knows! Her consultant said she was pretty much guaranteed to lose her hair or at least get dramatic thinning. Not quite what my research had said, but seems she's prepared.

Did have a wobble today. She had some persistent lower abdominal pain overnight. Enough to periodically wake her and continuing through today. No temp (I suggested she do temp every day in run up to chemo to establish a baseline morn and eve). Not, as far as I know, a symptom of pancreatitis (would be higher pain like last time), but as usual every twinge is scaring her. Think she may have overdone the rich food while my sis was here and upset her system along with a couple of glasses of red wine, so will wait and see.

Sarah

XX

This blinking (for want of a stronger word) disease never lets us relax does it Sarah?

Nikki

Line placement went well. It is much more discrete than Mum thought it would be. Sore still, but she's already forgetting it's there some of the time. We've also got some more recent bloods. 29 for the bilirubin - yey. Not bad considering it was over 300 on the day of the stent op 4 and a half weeks ago. Also paid attention to the CA19-9 for the first time. 90 a week ago. Haven't got past levels to compare, but think that's not too bad.

Have clarified the regime. They're starting slower - usual dosage Oxaliplatin, 75% of usual Irinotecan, no 5fu bolus, but normal dose for slow infusion by portable pump. As most would, Mum's worried they're starting too slow and she may not be fit to have that ramped up later (the plan if she tolerates well). That's swings and roundabouts. We'll see.

One good bit of news to share (well encouraging bit of news). The radiologist had another look at her 2 CT scans to check out the liver lesions in more detail. His summary said the enlarged lymph node is almost certainly due to the pancreatitis/biopsy and the two quote "tiny" liver lessions were in fact there on the first 9th Sept CT, but weren't spotted and when comparing he could see no size/shape change so suspects they will be cysts. Still not in the clear on that til MRI results back next week, but has freed up a bit of both our heads to focus on the chemo.

As a little light relief I took her out for lunch and a movie today. Went to see Rush (about formula 1 rivalry between Niki Lauda and James Hunt) and twas very good. Also, the barmaid in the pub made me laugh (much needed). She wasn't enjoying her shift, but said Monday had been worse. On Monday she'd said to her boss "if you want bright eyed and bushy tailed find a [very rude word] squirrel!". Thought someone here might want to reuse if expectations of putting on a brave face get too high sometimes.

Take care all,

Sarah

XX

A very emotional day yesterday. The nurse thought Mum would be relieved to have something finally happening, but she had a hard to fight gut reaction that it was wrong to voluntarily put poison in her body. She cried with me for the first time, but thankfully had no symptoms during the infusion or overnight, but today her fingers have been tingling in the cold as an expected symptom of the Oxaliplatin and this afternoon she was sick for the first time.

That concerned her as she was told she should not be sick taking the antiemetics (she has 2 to take 4 times a day as a precaution). We think it was because she woke up at 4.30am and took first dose then, then second with breakfast at 9ish, then delayed the next dose until about 3pm. Probably a bit too long. She's talked to the ward at the hospital and they've said to keep an eye on things and contact them if it happens again after the next dose, then they'll consider changing to different ones. Think it's Ondansetron she's currently on plus a steroid twice a day for 2 days (Dexamethazone - doubtful spelling there). The other thing that's really worrying her is that her appetite took a dive the day BEFORE chemo and is gone now. She's going to try meal replacements once a day to get some balanced nutrition down, but will have to see how she goes.

She's scared. Don't like that she's scared, but it's 1 down and hopefully only 5 to go, depending on the outcome of the last MRI to look at those liver lesions. Monday PM for that appointment.

Hope you are all keeping on keeping on.

Sarah

Damn me for being so bloody introspective. Spouting trivial non-problems, then spotting Karen's post. Can't believe Bob's gone. So, so pissed off for him, furious at this bloody disease and so sad for Karen and her kids.

Hi Sarah

I know. Still shocked and upset.

Has your Mum been given steroids? They are given for anti sickness with chemo but also have the added benefit of boosting appetite. Jonathan always had a huge appetite the weekend after each infusion. I also remember that Ray (Julia's hubby) was very sick after his first infusion but was much better after that.

The tingling is a classic side effect of the oxalyplatin. Keep an eye on it over the next few sessions and make sure you let the onc know as they can adjust the dosage. The tingling can be cumulative and a bit unpleasant. I know I'm probably telling you nothing you aren't already doing as you seem fantastically clued up on everything.

Hope your Mum feels ok over the next few days. The first session is very scary as you don't know how you will react. But it will help inform future cycles.

Cathy xx

Thanks for the post Cathy, as you illustrated everyone is different.

Mum was sick again today after a day of fairly constant nausea. She actually threw up in Sainsbury's car park and was mortified. I tried to deal with that. She also has the extreme sensitivity to some smells that others have reported - I have to clean out her fridge for her tomorrow so she can open it without having to hold he breath!

For effects of Oxaliplatin on fingers and toes and Hickman line comfort just found some good stuff on-line (spending money is another of my fortes and feels like the only thing I can really do now). Silk/elastane bra tops (reportedly didn't feel like she was wearing anything and kept tube under control). Riding gloves -cheaper than arthritis or other specialist gloves, thin but warm and have grips. Also ordered some silk socks which can go under another pair in real cold let feet keep warm and not get sweaty in bed. All not too pricey and from Amazon and can share specifics if needed.

Did call oncology again as with lack of appetite (even while taking dexamethasone steroids) and throwing up is a concern. Turns out she's not on Onadestron (if that's right) it's domperidone. Made a poor assumption based on not having the info an looking at most common anti-emetics. Think an ask for a change might be in order. I'm sure it's not helping that she's making a normal days dose stretch over 20 hours (waking up at 4am, not getting to sleep til midnight ish).

She's also stressing about keeping fluids up as water, coke and oj are starting to make her feel sick. From what I understand nausea should be tailing off on day 4 or 5 so hopefully this will resolve. She doesn't want a dose modification if this is just a med issue so we'll see next time around.

Take care all

Sarah

XX

I'm with you on the spending money being something you can do Sarah, even brought an exercise bike as Paul thought it would help build his stamina up, of course it just sits in our lounge unused, but at the time we were convinced it would make all the difference!

Have also spent a small fortune on different drinks. The best one for Paul, especially when he is feeling sick, is Bottle Green, Lemongrass and Ginger. Probably not for everyone, but it works for him. Just worth trying different things and hopefully there is something that will suit your Mum.

Your Mum must be so glad she has got you Sarah,

Best wishes,

Nikki