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InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Mon Aug 26, 2013 5:09 pm

Hi Karen,

Yes I did get your mail, thank you! Will drop you a line very soon. As news, she's off Creon to see if that's cause of rash and rash is drying out but not sure what's cause and effect. Itching is very up and down, but I think she's less yellow (hard to tell when you see someone daily). Indigestion is gone and appetite is slightly improved.

I'm actually off with my 2 girls and my other half to Legoland tomorrow, but we've also been called with the offer of an appointment tomorrow evening with a London consultant surgeon who knows about complex locally advanced cases, especially ones with vessel involvement. Can't miss that so I'll go with her then travel on to join the family. I'm slightly nervous her local Dr will react badly given we've driven this independently and the Addenbrooks MDT isn't happening until next week, but I can't think of a single reason, except protocol, why a 2nd opinion can't come first. We'll see.

This won't make it any more operable, but every well informed extra opinion makes Mum happier that she's equipped to decide best options and live with the outcome.
Last edited by InfoForMum on Fri Sep 06, 2013 1:09 am, edited 1 time in total.

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: "Borderline" Suitable for Op

Postby karen17 » Mon Aug 26, 2013 6:15 pm

Hi Sarah,
I think your local Dr will be just fine. You need to take every opportunity you can and only you as a family can drive things forward as a priority as you will just be one of many to your Dr. We have always be encouraged to get second opinions.
Good luck with the consultation and try to enjoy family time at LEGOLAND.
Take care
Karen

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: "Borderline" Suitable for Op

Postby Slewis7313 » Tue Aug 27, 2013 8:20 am

Hi Sarah, I'm totaly with Karen on this and you must look after number one! The second opinion is really important so you should not have any qualms about persuing other avenues in parallel to the standard treatment. I too was envouraged by my Oncologist to do this, but agreed to keep them informed. I too had rash problems, but they started on my second week of chemo (GemCap) and I had already been on Creons for 6 weeks at that time. The rash was not spotty, but like a big dark blotch covering my stomach and thighs. My chemo was susppended for a week and steroid cream applied which did the trick. Probably not what you are experiencing as mine seemed to be chemo related, but though I'd mention it just in case.

Steve

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: "Borderline" Suitable for Op

Postby PCUK Nurse Dianne » Tue Aug 27, 2013 3:43 pm

Hi Sarah,

Interesting that you mention the rash that your mother has, I wonder if this may be in relation to the antibiotics that may have been given pre the procedure of stent insertion. It is normal procedure for patients to have antibiotics prior to the procedure and also in some instituions it will also be after the procedure. It may be worth checking this with the Consultant who has done the procedure. As this was done at the time of the procedure the rash should be starting to clear up by now. I have not heard of any patients having a rash secondary to Creon before.

Dianne,
Support Team

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Sat Aug 31, 2013 11:38 am

Steve, Dianne, Karen,

Good steers re rash. Very good to know it isn't an expected symptom of Creon. It did mean we cancelled her massage which was a shame, but it's getting better (was very chickenpox-like, but smaller - blisters, to red crusty and now going). Will make sure her local guy says whether antibiotics given. That's great. Steve, it's good to know what stuff might happen down the line. Also, the jaundice and itching is resolving, but she's got a bad upset stomach. Questran for last 3 days, but still not back on Creon. She's unsure what to continue and what to stop.

Despite our expectation that her local guy would be grown up about this, we did have a v iffy meet, but a very positive meet with the surgeon in London. Her local guy bandied phrases about like "never heard of him!" when we asked for the referral and "clutching at straws" when we talked about surgery, then told her the post surgery outlook was very poor in terms of both quality of life and overall prognoses with strong implication it wasn't worth pursuing. Neither of us are ignorant that post surgical prognosis is still pretty ropy for this horror of a disease, but very much took wind out of our sails.

After that her London guy was a breath of fresh air. He has reviewed her scan with his consultant radiologist and is planning to operate after she has a course of chemotherapy and radiotherapy.

Full steam ahead now working out where she can have the chemo as there's a shortage of local HPB oncologists (Addenbrooks is 1hr 40mins away which makes it less than ideal).

Legoland was great Karen. The only fly in the ointment was getting hit by a lorry on the M25 on the way home and writing off the car. Miraculously no-one hurt and no-one else involved, so someone up there is looking out for us! My reaction to that told me I should probably think about getting signed off work. Spent much of next day in uncontrollable tears or shouting at someone, so don't think I have enough petrol in the tank to support mum and go back to an incredibly challenging job, with understaffed team just now.

So, will carry on with updates and hope you all take care.

Sarah

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: "Borderline" Suitable for Op

Postby Cathy » Sat Aug 31, 2013 1:05 pm

Hi Sarah

I think a bit of time off would be a good idea. I'm sure you are right that your reaction to the car accident was a reflection of all the other stress you have to deal with. I think, as carers, we tend to focus so much energy onto the person we love and care for we forget about ourselves sometimes. The early days post diagnosis are especially exhausting where there is so much to take in, learn and to do.

Do you mind if I ask if you could let me know the hospital and consultant you have seen in London? Perhaps the support here could let me know..? We've been happy with who we have seen but have a scan coming up so it would be interesting to know.

Many thanks.

Make sure you rebook that massage!

Cathy xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Sat Aug 31, 2013 2:09 pm

That's kind Cathy. Easy to feel like a wimp, but know my signs of having too much. Was given a job pre-Christmas that was subsequently split between 2 then 4 people and we are all busy working more than full time doing our share of that. For the 3 months I was doing totally new 4x job with no-one listening to practical suggestions to make it work, I wore myself down so bad my other half marched me to the docs. I had a month off to mid Jan. Madly, I let it pretty much destroy my relationship with my kids and my other half before the cracks really showed at work.

I didn't believe in time off for stress til then, but am far more respectful now of the fact that resources are limited and for those of us with families and jobs as well as someone going through this we have to prioritise realistically. And for those folk who don't work for bigger companies where allowances can be made my heart goes out to you and hope you have great support networks to lean on to fill any gaps.

Ref that London contact, have a chat to Jeni or Dianne! Have caught up a bit with your story Cathy. Hope things are ok for your man and I've found it incredibly helpful (if scary) reading through your and others' FOLFIRINOX posts. It astounds me the level of expertise accumulated by everyone on here. I have friends who are working on smart text analysis systems and I suspect an anonymised harvest and smart analysis of experience on here could produce an unrivalled, searchable body of knowledge on all kinds of treatments and drugs for this nasty disease.

Descended into Geek there SORRY!!! Do take care tho and let me know how things go and where you're at.

Sarah
X

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: "Borderline" Suitable for Op

Postby Cathy » Sat Aug 31, 2013 6:12 pm

Hi Sarah

Nothing to feel wimpy about when you are dealing with a profoundly life changing and challenging time alongside life's other challenges. I think we are all super women and men! Your Mum is lucky to have you!!

I work full time too. Our Christmas was so awful with his diagnosis just before that getting back to work in the New Year in a way was cathartic in getting back a bit of normality and routine but if things got/get too much then I wouldn't hesitate to have time out. We can't keep all the balls in the air all the time. I have arranged some flexible working this year (working from home 1 day a week) which helps so perhaps you might be able to sort something out along those lines. As carers we have a legal entitlement to ask for flexible working and your employer a legal requirement to consider it.

Thanks for asking about Jonathan. I feel a little guilty posting about him sometimes when he is feeling fairly well when others aren't. Although advanced he has suffered little from the symptoms of the disease (so far!!!). His main issues were with treatment side effects and even that he coped with well until things went belly up with his last 2 cycles (lquite iterally if you read this thread >> http://forum.pancreaticcancer.org.uk/vi ... t=15#p8281 ). He's had a couple of months off and his next scan is next week (gulp). He's got a bit of a tummy complaint at the moment probably meaning he needs to start having enzyme supplements but that hasn't stopped him having a night at the pub last night and a curry tonight. Not exactly the anti cancer diet but there you are....

Hope you have a restful and stress free weekend.

Take care.

Cathy xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: "Borderline" Suitable for Op

Postby J_T » Sat Aug 31, 2013 7:24 pm

Hi Sarah, well you certainly seem to be on ball, as Cathy says, your mum is lucky to have you on her side. I'll take bets on you against any dismissive onc! lol

The car crash sounds horrible, bad enough at any time but when you are already stressed ...
We've just had a leaking pipe, not quite on the same scale but we could have done without it!

Cathy, please, please, don't ever worry about posting how well Jonathan is! Why not? We like to share the bad times AND the good, ESPECIALLY the good. So glad he is feeling so well and fingers crossed for good results next week.

You two, I don't know how you cope with working, and those with children to look after. Just some amazing, resilient people out there. I'm proud to 'know' you all!

Keep on keeping on!

Julia x

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: "Borderline" Suitable for Op

Postby Bee » Sat Aug 31, 2013 9:06 pm

hi Sarah,
I have been away so am have been unable to post and catching up now. I can only echo what has already been said so far, it sounds like you are doing everything you can but you have to look after yourself as well. It is a juggle , work, family, appointments etc etc.
it sounds like you need some time out and TLC yourself!

Cathy , as Julia says don't feel guilty, all posts are welcome. Will look out for the scan results next week, keeping everything crossed!

Bee x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: "Borderline" Suitable for Op

Postby InfoForMum » Sun Sep 01, 2013 12:11 am

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
Last edited by InfoForMum on Fri Sep 06, 2013 1:10 am, edited 1 time in total.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: "Borderline" Suitable for Op

Postby Cathy » Sun Sep 01, 2013 8:54 am

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

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: "Borderline" Suitable for Op

Postby karen17 » Sun Sep 01, 2013 10:24 pm

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.

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: "Borderline" Suitable for Op

Postby Bee » Mon Sep 02, 2013 7:18 am

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

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: "Borderline" Suitable for Op

Postby Cathy » Mon Sep 02, 2013 12:32 pm

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