Planning Chemo in Prep for Surgery

[InfoForMum]

ABOUT THIS THREAD - This thread starts the day before initial diagnosis (see this entry). Am changing the subject as things move on, so skip to the bottom if you want to see the post relevant to the current subject. If you want the full story it's here, but brace yourself because I'm not good at keeping things short!

Hi all,

My Mum is going for her post cat scan consult tomorrow. Quoting consultant "We won't be surprised to find it's something serious". She was also told symptoms were textbook for cancer, but still holding out hope that the initial ultrasound missed a low down gallstone and the "anomaly" seen in her Pancreas is nothing. Preparing, without thinking too hard about the full implications of a PC diagnosis, for the worst and hoping for the best.

The question, very simply is whether the diagnosis, if PC and any follow up tests should stop her quickly getting a stent to resolve blocked bile duct symptoms? I realise, if it's the very best news e.g. gallstones, there would be a permanent fix with gallbladder surgery/stone removal, but he implied he wouldn't rush to do a stent if cancer was diagnosed. She is really struggling with that because she know's it's poisoning her body just when she suspects she needs to retain her natural good health and those symptoms are the main thing currently making her feel depressed and very very poorly.

Some background if it helps and will try and update you tomorrow;

My Mum is 68 and very fit except for the long history of indigestion written off to various causes (yes, that's been on our minds a lot recently). She's currently feeling pretty poorly because 4 weeks ago she had sudden on-set high right abdo pain, loose and pale stools, dark urine, sickness, loss of appetite. Painless jaundice for last 2 weeks and a week of chronic itching. It's taken 3 weeks of doctors visits and referrals to get to this point.

Sarah

Edited September 6, 2013 by InfoForMum

[KATB]

Hi Sarah,

The first thing they would probably do is the stent to resolve the jaundice. Chemo wouldn't be given until this is resolved. Certainly this was the first step for my dad and he felt so much better once the jaundice was resolved and then the next step was deciding on treatment.

K

x

[KATB]

Gosh I wrote that post late on and it's a bit repetitive!

Let us know how you get on today.

K

x

[PCUK Nurse Dianne]

Hi Sarah,

Sorry to hear of the delays in your mother having access to treatment. As mentioned if your mother does have an obstructed or narrowed bile duct this does need to be remedied. If it is due to gall stones, these may be able to be treated via a procedure called an ERCP, which is an endoscopic procedure. If this is due to a cancerous process, certainly a stent to open up the bile duct is the first process. Then it will take some time for the jaundice to resolve which may take 1-2 weeks.

Sarah please feel free to contact us on the support line (020 3535 7099 or support@pancreaticcancer.org.uk)if you wish to discuss this further after results of your mother's scan. There is a particular pathway that patients with a potential diagnosis of pancreatic cancer should be following, and we can help to guide you through this if necessary. Please do not hesitate to be in contact if we can help.

Kind regards,

Dianne

[InfoForMum]

Thank you so much for the prompt reply. It is the news expected and he's offered her a stent op tomorrow night, so that is one question out of the way and so, so, so many still to answer.

It's a local 18mm adenocarcinoma with some doubts about operability due to suspected involvement of the portal and splenic vessels. Up to the vessel involvement, that felt like amazingly good news. MDT locally discussing operate/don't operate decision either tomorrow or Monday. If yes, they'll refer to Adenbrooks to plan a whipple, if no, it's on to the oncologists. If I sound together it's because I cope by gathering all the info and dealing with the practical bits. Will be dealing with the emotions when they finally catch up with me, probably when I speak to my sister in Teesside.

A huge concern now is getting a second opinion if the MDT decide it's borderline rescectable and decide against. We'll want that opinion because I understand there are other surgeons in the UK who will consider more aggressive treatment. Equally if it is deemed operable, I'll need to find a second opinion because Mum will want to know where they are getting the very best outcomes in the UK and if a stomach saving op is doable.

Thinking far too much right now, so will leave it here. So glad I found this site. Feel i'm going to need it lots in the next wee while!

Sarah

Edited August 21, 2013 by InfoForMum

[suef]

Dear Sarah,

I am so sorry to read the news about your Mum and wish you much courage for the days and weeks ahead. I am very glad that my post on changing my surgeon was useful and I do urge you to contact the Support Team as they have so much valuable knowledge to share.

I also had a stent inserted, before my Whipple, and it was a just a minor op with a quick recovery, I hope it will be the same for your Mum.

Do keep in touch and let us know how things are going - and do fight to get the best care!

Very best wishes,

SueF

[InfoForMum]

Many thanks for your kind words Sue! My mum is also Sue (happy co-incidence) and thought it would be nice to introduce her properly.

Stent op was successful today so no surgical alternative tomorrow - yey. Bit of a laugh on check in today as her jaundice is quite severe, so the nurse assigned had no trouble picking her out in the waiting room. There have to be some advantages to looking like Bart Simpsons long lost auntie! Spoke to her about 90 mins after the procedure and she was still high as a kite on pethadine and temazapam which resulted in some more much needed giggles.

Thanks to some superb advice from the support line, she also asked for and got a prescription for pancreatic enzymes. Had no idea it was helpful before whipple, but it now makes perfect sense that there may be an effect on enzyme production and flow in the pancreas that won't be sorted by stent as well as the blockage to bile duct which will. As my mum is a superb cook and a foody it should make an enormous difference to her quality of life, not to mention helping sort the half stone pre-stent weight loss and restoring her health for the fight ahead.

Local MDT was today. With potential involvement of join point of splenic and portal vessels could come back marginally rescectable with recommendation not to operate. Have specialist in London, where they're more experienced with marginally rescectable surgeries and downstaging to improve outcomes for marginal ops all lined up for 2nd opinion regardless of MDT outcome. Again thanks to excellent advice from the helpline (can't express enough how comforting it was to know my research is mainly right and i'm not tilting at windmills!)

Tissue test due back Monday-ish. Just a scrape from stent site not needle biopsy so only 30% chance of conclusive look at stage/type of tumour. If needed needle biopsy to follow soon after. Want to get the full measure of this perniscious little b*stard so we can make it's life misery as soon as poss.

Again, can't believe the kind, brilliant and comforting help that's been volunteered here in such a short time. Sue I wish you well and I'll try keep in touch.

Sarah

X

[yorkypaul]

Hi Sarah

I am so pleased that you have done your research well and that you are so positive in your attitude to tackle this disease with knowledge and foresight! Your mum is lucky to have you on her side fighting this thing in such a measured way. I don't need to tell you to push, push, push to get what mum needs all the time because I can tell already that you will do just that!

Best wishes and a big hug!

Paul

[InfoForMum]

That's so kind Paul. Feel like it's a delicate tightrope between alienating current care givers and driving for the very best care, but rest assured I am willing to thoroughly p*ss off just about anyone as long as Mum gets what she needs. Am constantly checking how much information she actually wants and telling her to tell me to sod off if she just wants to fall apart a bit or have a "non-cancer" day, but so far it's working. Early, early days and one step at a time hey!

Having had a look at your story I'm very touched you took the time out to reply at all, hope you are finding some peace and hope your health concerns are properly resolved.

Edited August 26, 2013 by InfoForMum

[InfoForMum]

I'm feeling a little less robust today, but updating here is getting kind of cathartic.

Great things;

A little victory dance was done round the loo this morning (fortunately heard from outside not seen) when pee had changed from mahogany colour to dark oak. Hoping to progress through laminate flooring colour chart to light beech then have a celebration!

First Creon taken today and usual 21 gun salute from her belly and pain didn't follow post meal - Fabulous!

Confirmed MDT locally has now referred to Addenbrooks and I have put feelers out with specialists good at locally advanced ops and nanoknife, sharing known information about mum to confirm early if anything obviously not worth exploring so we aim for the right 2nd opinions.

Not so great things:

Itching actually seems to be worse not better which is making sleep impossible. How quick after a stent should this improve? Only 24hrs in now, but her consultant got her hopes up this morning by suggesting he would have expected to see a minor improvement by then. Pee improvement says bile getting thru, so have suggested she calls consultant first thing if progress not made. Don't want to think delay in stenting cos mum withstood jaundice symptoms so well has caused liver probs

Got a copy of the notes the consultant forwarded to the MDT. Turns out not only is there evidence of involvement of confluence of splenic and portal vessels, there's doubts about the hepatic artery too and "teardrop" anomalies seen in both. Doesn't feel like great news and makes me itch to talk to those specialists in advanced ops right away.

The MDT at Addenbrooks is delayed to 2nd Sept because they only do em on Mondays and Monday is the bank holiday - let's hope the tumour respects public holidays too hey!!!!

So very much mixed bag. On-going itch has totally knocked any confidence mum got from the reportedly successful stenting so hope we can get to the bottom of that tomorrow. Haven't shared my concerns about the extra vascular involvement with Mum as not done my research yet. Got a Tuesday meet with the consultant here when histology should be back if we haven't seen him before for on-going jaundice issues.

Hope you're all taking care and catch up soon.

Sarah

[suef]

Dear Sarah,

Congratulations on your superb organisation! So glad the Creon enzymes are working.

Just a little note to say that after my Whipple (done in Belgium) the surgeons advised me to stop drinking alcohol completely, except for a mouthful once a year. I believe that British surgeons are less draconian - but I do not drink any alcohol at all now.

Keep strong!

Best wishes,

SueF

[InfoForMum]

Thanks Sue,

She's been off the sauce since that initial episode of pain and vomiting, so she's being a total soldier.

Sx

[InfoForMum]

So, a new day and thankfully stuff I can do. Have a solid steer on a good consultant surgeon in London for 2nd opinion. Getting CT on disk ordered today to share.

Spa day booked - Total relaxation full body and scalp massage + deluxe manicure for next friday - hopefully she'll be able to stay still for that long with the itch!

Pursuing Questran for itch relief and a calomine alternative called poxclin. Worked for my nephew with chicken pox when calomine wouldn't cut it - non aerosol foam that cools and soothes, in case it helps anyone else.

Sarah

[InfoForMum]

So she had a good night last night - YEY! Homemade therapy consisting of dunking very itchy feet in a bath of cold water with bicarb in it every time she woke up plus Nytol. Feeling rested put her back in fighting mode.

The only downer is that she's now developped a red itchy rash on back and chest which started to spread to arms this evening. Can't find much about that, but most likely causes look like an allergy to Creon or stent. She's keeping a close eye on temp (so far normal), we're obviously concerned. Effect on pee and other is variable (darker then lighter), but from last bits of advice on how quick this really works, that's perhaps to be expected.

Her consultant actually phoned her at home today, but didn't have a steer on the rash, he did caution that the stent could move, but said it was "a very tight fit" so it was unlikely. Meeting him Tuesday AM and he suggested more bloods, but would have thought ultrasound to check all's well would be better bet.

Anyway, anyone with rash experience would be great to hear from.

[karen17]

Sarah...... no rash experience but just to let you know your email reached me and I pinged one back. Hope to hear from you soon xx

[InfoForMum]

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.

Edited September 6, 2013 by InfoForMum

[karen17]

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]

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]

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]

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]

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]

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]

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/viewtopic.php?f=3&t=1034&start=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]

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]

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