Steve's Cancer has Spread to his Liver

[Hopefulwife]

Hi everyone, I took Laura's words to heart about enjoying the good days when they happen. We thought that Steve was doing well on the SCALOP trial - with the chemo, the steroids for appetite, the Domperidone for sickness, the Creon with food, and the Fentalyl patches for pain, he finished his second cycle of Gem/Cap. His week off was when we had the fabulous weather so went to the seaside and stayed at a friend's house in Swanage overnight. We sat on the beach and took photos of ourselves in the sunshine, and even managed a meal out together. On the Friday it was our Macmillan Cancer Coffee morning, and Steve was guest of honour and whilst he was shattered afterwards, enjoyed seeing many of our friends, who all commented on how well he was doing, and how he'd put weight on (from 8 up to 9 stones - he should be 11!). On the Saturday he started to get a few twinges and on Sunday was getting quite a lot of pain again, in his stomach and back.) He held out for his pre-chemo blood test on Tuesday and when we saw the oncologist on Wednesday she wouldn't give him the chemo as his blood results were all over the place. They said it would be either his stent which had become blocked, or an infection. They put him on antibiotics but the pain just got worse. His temerature spiked over the weekend so we ended up in hospital and Steve stayed there till last Friday. After lots of ultrasounds and a ct scan, they said the stent was blocked, he was severely jaundiced, and the stent would need replacing but they didn't have all the results yet. Steve had a new metal stent fitted on the Wednesday evening - but still no results. We had to wait till Thursday evening before being told the news we were dreading - the primary tumor has grown from 6.3 cms to 7.2cms and there are secondaries in his liver of about 1 cm each. So he is off the trial and they are suggesting he be assessed for Folfirinox which is highly toxic but may give Steve some more time. No chemo - 3 months, with chemo about 8!! How do you cope with a bombshell like this?? We have had the weekend to try to come to terms with it all and are due to see the oncologist on Wednesday. We are also due to see the palliative pain consultant to review the pain relief as the team were thinking they may not be effective enough for the new level of pain. Steve was on 37mg of Fentanyl but they took off his patches on Friday morning and told him to take 10 mls Oramorph every 4 hours!!! By 10pm he was in the level of agony which put him in hospital back in January... We put back the patches, and he's been taking 10 - 20 mls oramorph and paracetamol for breakthrough pain - in fact last night we had to up the patches to 50. Any thoughts/advice would be greatly appreciated.

I do read your various updates and have tears in my eyes when I realise how many of us are suffering with this terrible disease. My heart goes out to those of you who have lost someone, and I think you are so brave and strong to still stay here and give kind words and advice to those of us still going through it. I thought we were doing so well and I could give you all some good news for a change - but it was not to be.

So hugs to you all, Diane xx

[lynbo]

Hi there

Read your post and wanted to offer some advice?

My husband had secondaries in his liver, so they upped his oromorph to a higher strength 20mg/1ml ? This meant he only needed 2 mls of it about 3 times a day, instead of 10 ml every few hours, also we stopped the paracetamol as his liver wasn't working properly so they were probably just adding to problem.

The palliative pain doctor will be a good help, why don't you keep a log of the medication and frequency, I did, which helped the palliative Dr to see how the pain was, and he adjusted medication accordingly.

They might give him a tablet called gabapentin? It's for the pain in the back and stomach.

I hope things are clearer after your next visit, don't dwell on timescales, everyone's body is different, and handles things differently.

Chin up, and write everything down

Thinking of you

Lynne xxxxx

[PCUK Nurse Jeni]

Hi Diane,

Sorry to hear about Steve.

Regarding the pain, has he been referred to a pain specialist? Or a palliative care doctor?

Nerve blocks are a good way of controlling pain, so it might be worth looking into this? Ask your oncologist.

Please email me at the support@ email address should you require further support/information.

KR,

Jeni.

[lynbo]

Hi Jeni

Think Rachael put in her post that they are seeing the palliative care team

Lynne x

[lynbo]

Sorry I meant Diane, not Rachael x

[PCUK Nurse Jeni]

Hi,

Just to clarify, acute pain specialists deal with nerve blocks, epidurals etc...

Palliative care specialists deal with symptoms and pain relief mainly via medication.

Jeni.

[laura]

hello diane , i am so sorry that things have gone topsy turvey just now, but so glad that you were able to get away and enjoy the moment, what can i say to help, we all feel so helpless don't we when one of us gets bad news, i'm sure you know our thoughts and good wishes are with you both, i dont know how i would cope, honest, and weve been having chemo for 17 months 3wks on 1 wk off, i'm always anxious when scan time/results come round every 12 weeks, but we're lucky and bri's doing well, though prognosis at begining didn't allow me to think we would be where we are now,for which i am so grateful.

please stay strong and positive, a friend of ours has had cancer 3 times in last 11 years [not p.c.] bladder, bowel,and last yr spots on liver which were removed, again he's plodding on, every one is so differant, doesn't matter about gender,or age, just how the cards fall, my bri says he doesn't like the hand he's been dealt but will try and get the highest score from them !

sorry i'm rambling, all the very best for thurs, we're at clinic also, i'll be thinking off you both, big hugs, laura. x

[Hopefulwife]

Hi Laura, ladies,

Thanks for your replies. It was actually the palliative pain registrar we saw yesterday. She was happy for Steve to stay on the Fentanyl patches - at 50 mgs and has given him a 100 mgs Fentanyl nasal spray for breakthrough pain, which he can use up to 4 times a day. He can also use the oramorph if needed, plus paracetamol. We just want him to get back to forgetting the pain then everything will seem a whole lot better. The oncologist is looking to put Steve on the Folfirinox regimen, starting next week. He has to have a PICC line put into his arm and have a GFR estimation test to check his kidney is able to withstand the chemo, before he can start. Steve has signed up for the new chemo because he feels he has to give it a go to get some more time, but we still don't know how long that is likely to be. We have been told that it will make him incredibly tired, and as it is very potent, he has to be as physically strong as he can be. So he has been very busy in the kitchen today making millionaire's shortbread and rocky road to put on the weight. Fortunately his appetite is good so that isn't an issue at the moment.

I'll keep you posted and Laura - you sound an amazing and uplifting positive person, so I shall take encouragement from you. Glad to hear that Bri is hanging on in there.

Big hugs Diane xx

[JST]

Hi Diane

I haven't posted much on this site but have spent the last 2 years reading other people's posts. My husband has been on Folfirinox since July of this year. Whilst the cancer hadn't spread to other organs, there is a local recurrance (after whipples)with nodes involved. After the first 4 sessions the latest scan showed that things were stable, the cancer hadn't spread further. Our oncologist tailor makes the chemo each time we see him, in terms of the % of each drug given within the regime. My husband is supposed to be continuing with this chemo regime - but stomach cramps and a recent spell of jaundice have delayed this. This week he has also had a metal stent put in, via a PTC procedure, which was rather unpleasant, but it would appear to be doing it's job. I am hopefull that we'll get back to chemo next week. I never know what's round the next corner..Thinking of you.

JST

[Hopefulwife]

Hi JST,

Steve was also in a lot of pain and they discovered the plastic stent they'd inserted via ERCP back in July had got blocked. The new one is metal and the jaundice subsided and his blood tests were returning to normal. When it all gets blocked the biliary tree gets upset, which I assume must be what is causing some of the pain. I hope your husband soon notices an improvement with the new stent. Can you tell me what sort of side effects your husband has had with the Folfirinox? The hospital gave us the Macmillan printed sheets about the 5FU and folinic acid, and the Oxaliplatin. It all sounds pretty horrid. When Steve was on the Gem/Cap he had practically no side effects at all except the start of Raynaud's Phenomenon. So the chemo side effects sound worse than the cancer if that's possible. Also, we think Steve will be put on Schedule B of the 5FU, but they have to check up on that for us. As Steve only has one kidney ( they decided to remove his left one back in March as it was only funtioning 14% - then they nicked his pancreas in the keyhole operation), he has to have a special 4hour blood test to check if it's up to the chemo. Any hints as to what's ahead would be really appreciated.

I'm sure you've been through a scary time so thanks for replying to me.

Diane xx

[laura]

hello diane, how are you today, bit more settled? you say you were given some macmillan paperwork,do you have a mac nurse? i asked for one in the early days, after our first meeting, collectively, we decided that regular visits were not needed but we were left with open contact,a new nurse joined the local team, and we needed a visit, since then she has maintained regular contact, more a mental support mechanism, though she has been most helpful over medication queries etc, at least when/if we need her more, she will know us quite well.

thanks for the compliment diane, much appreciated, not quite how i see myself but hey if i have been any help, thats great.,we had a very good visit with our oncology team yesterday and whilst its still inoperable/incurable, wr're looking to planning a break in the new year. as i've said before don't like to say to much about how we're doing, cos so many on here have not had the "luck"?! we are currently experiencing.

lots of love to you and yours have a reasonable weekend, xx :

[JST]

Hi Diane

Everyone’s story seems slightly different. My husband started off with full doses of all 3 drugs under FOLFIRINOX. It was suggested he have 4 lots, with 2 weeks in-between. His 3rd and 4th sessions were scaled down and whilst he was tolerating the regime fairly well, our oncologist advised that it was better to have the chemo for longer than get knocked out by it, and I believe that some patients do get floored by this combination at full doses. From what everyone says, the toxicity levels are very high. Our understanding is that the Oxaliplatin is the worse. We assumed that his stomach cramps were being caused by the chemo – in the information we were given, one of the side effects of Oxaliplatin was stomach cramping. We haven’t really got to the bottom of this. We’ve been told it is probably a combination of the scarring from the whipples, the chemoradiation and the current treatment. Everything his body’s been through. I don’t think they really know. We do know there is no obstruction causing the cramping. The Oxaliplatin has been dropped from my husband’s cocktail now. Last time, he just had the 5FU and the Iriniticin. I have to say he is tolerating the FOLFIFINOX better than I had anticipated. Some hair loss too, it is much thinner now than it was and some weight loss. I am not sure that this is very helpful? My husband has just turned 50, he was diagnosed when he was 47.

JST

[Hopefulwife]

Hi Laura, and JST,

Thanks for your replies both of you. I come on here for a bit of "me time" and it's lovely to get questions answered by others in the same shoes. Our local help comes from our local hospice rather than Macmillan, but they do the same thing. Our contact, Debbie, has been really helpful. It was she who put Steve on the Steroids for appetite and the Domperidone for the sickness, both of which are stable whilst he sticks to the right dosage. One of the Oncology registrars suggested Steve wean himself off the steroids but his nausea and loss of appetite returned, so we went back to the dosage he was happy with, which is only 2 mgs a day which is very low any way. Steve has been in much more pain over the last couple of weeks or so, which we expect is from the tumor getting bigger and what it's doing to his liver. We've now upped the Fentanyl patches to 62 mcgs to see if it helps. As it takes about a day for the effect to be felt we are patiently waiting but if that's not enough I shall be sticking more on him. He hasn't had any relief from the Fentanyl nasal spray yet but I suspect he hasn't been sniffing enough to make a difference! Steve hates taking any medication - in fact before this all kicked off it was 4 years since he'd visited our GP. He just wasn't ill.

JST I'm sorry to read how young your husband is. Steve will be 59 in December, and fortunately for us took early retirement at 55 so we managed 3 really good years before this all kicked off in January. He sounds like he's been through the mill - a bit like Steve. Hang on in there!

Have a good weekend both of you and your other halves.

Diane xx

[laura]

hi there diane, just posted and was reading through some earlier posts, and see you havent been on here for a while? how are you?and how is steve? do reply if you are still logging on would be nice to hear from you, kind regards laura xx

[Hopefulwife]

Hi Laura,

Thanks for thinking of me (and Steve). I haven't been posting because we've been having a bit of a rocky ride over the last few weeks. Steve started the Folforinox chemo three weeks ago on a two week cycle. They fitted his PICC line on the Monday, gave him the chemo on Tuesday, he came home with the chemo drip, had 3 units of blood transfused on the Wednesday, and has basically been wiped out since the Thursday. They disconnected the chemo on the Thursday and he just felt exhausted from then on in. His usual walks suddenly started to be whittled down to a quick walk up the road from the 2 miles on the flat he was managing beforehand. I noticed he was just getting more and more tired and lethargic. Our pain consultant recommended Steve try Clomazapam to help with the pain management, as the Ketorolac and OxyNorm weren't enough. He started it the Tuesday of the chemo, and by Saturday morning wanted to stop living!! He just lost all motivation to do anything, even getting out of bed in the late morning. A real down turn. He had a couple of times when he felt sick and did vomit as well. He hasn't had any diarroeah but constipation, and "going" exhausts him. But his mood was so low I said "no more Clomazapan so we stopped it and told the consultant. But the real problem has been the mouth ulcers which go all the way down his throat and stop him wanting to eat. Last Thursday, which was effectively day 10, his temperatue spiked at 38.9 so it was phone calls to the hospital who said to bring him in. They gave him oral antibiotics and let him come home but the cultures they grew showed up staphylococcus (spelling!!) and he had to be admitted on Friday afternoon for i.v antibiotics. He ended up being neutropenic and in isolation. They can't pinpoint the source of the infection but have given him two antibiotics, 2 units of blood, an injection to kick start the white cells, and are trying to determine whether it's the chemo or Ketorolac which is causing the problem with his gut. He could only swallow two small sips of water before his chest/gut was in agony. So tomorrow they are doing an endoscopy to investigate.

Steve is at the point where he is debating whether to carry on with the chemo - if it is the cause of the debilitating sore mouth/throat/gut - then he doesn't want to experience that again. Heartbreaking decisions for him, especially with Christmas coming up and two boys in their early 20's and me to consider. I am lost what to say because I don't want him to suffer and if the chemo means suffering, then he has to stop it. On the other hand I don't want to tell him to give up because I don't want to sound uncaring, which of course I'm not.

Any words of guidance would be so appreciated.....

Diane xx

[louiepc]

Hi Diane

What a horrible time you have both been having. It's a hard one heh? If Steve is in that much discomfort then I can understand his thinking of stopping it. Wait and see what comes about with the Endoscope tomorrow, maybe they might do a scan too. I think when there's hope, however awful the treatment is then it must be worthwhile carrying on.

I went through the same a few months ago, Mum has pc, and she had 4 lots of chemo, absolultely wiped her out, slept for days on end, got very low and down, and incredibly angry. She would say things that she would never normally utter. At the time I remember saying should we request a scan and see what's happening, because if it is doing no good then, we may as well stop. Unfortunately, for mum, the choice got taken away from her - it's spread now to her stomach. She's on pallative care - limited time now - the docs initially were doubtful that she would reach Christmas, we are hoping and praying that she does. Not sure if it's spread any further yet - she's been saying that her back is in constant pain, near her spine. Wondered whether it had now gone there - terrible terrible disease.

Anyway, back to Steve. Is there any foods, that maybe would help with the ulcers? Yoghurts, milky drinks, ice creams, chicken soups, rice puddings???? I know it must be excrutiating, but I remember reading that it is a side effect, maybe if they find out that it is the chemo, they could put him onto a different type?

I hope all goes well tomorrow - thinking of you - and wishing you all the best

love louie xxxx

[john27]

Hello Diane..

I've been reading your posts and it does sound like your Steve is going through the mill, so I hope the endoscopy went well today, not too painful.

My mother never quite made it to chemo ( 1 session ) but I remember being told about mouth ulcers/soreness and we were told to give Mum as much fresh pineapple as possible because of the natural enzymes protect the mouth lining. Might be worth a try or ask at your chemo suite.

Fingers crossed for you and best wishes

John

[Nardobd]

Hi Diane

Just wanted to add my voice to the other well-wishers. Obviously You're torn between wanting him to be with us and not wanting him to suffer...a feeling I know only too well! Whenever Ted has had to make a decision about chemo I've always stepped back and said that because I don't feel the side-effects I can't advise him but whatever he decided I'd support him 100%.

Thinking of you both

Nicki

[PCUK Nurse Jeni]

Hi Diane,

Folfirinox is a fairly toxic regime. It is unfortunate that Steve became so ill after it.

With regard to the sore mouth, has he been given a mouthwash? Difflam is very good, and is a type of anaesthetic too, so dulls the pain. Mouth ulcers are common with most chemotherapies, but people get varying degrees. Usually, using the mouthwash keeps them at bay.

It is possible they will reduce the dose of the next chemo by 20-25% - which is common when a person gets neutropaenic sepsis after cycle 1. Steve is probably feeling dubious about it, but a lot of the time when the dose is reduced, people can cope better with it. The side effects don't tend to be as severe, and they usually make some amendments to prevent it happening again -eg: giving the injection to stimulate the bone marrow as a matter of course, rather than waiting for the white cells to drop.

Hope this helps,

Jeni.

[Hopefulwife]

Hi all,

Thank you for all your advice and words of encouragement. Steve came home on Thursday, after his endoscopy in the morning. They reckon the ulcers are a combination of chemo and Ketorolac, the chemo for the mouth/throat and the Ketorolac for further down the stomach. We were given Difflam, GelClair and an artificial saliva spray to help. Steve had an EUS guided celiac plexus nerve block performed on Monday afternoon, in the hope that it would relieve some of the pain, but unfortunately it has made no difference so Steve has gone back on the Ketorolac. The pain consultant is concerned about it causing a stomach ulcer and upsetting his kidney, but will monitor him closely and Steve is happy with that. He has also been put on Amitriptiline 10mgs at night to see if that approach may help with pain relief - worth a shot. Though I will take him off it if he gets suicidal tendencies again!

With regards to continuing with the chemo - we are seeing the consultant on Monday to discuss the next steps. Jeni - I will ask if lowering the dose may help, especially as he was neutropaenic, as well as having the mucositis. I think Steve is going to give it another shot and if the dose isn't as potent, may not have such severe side effects. He is however, most upset that his hair is now falling out at a rapid rate. He sees it as a real reminder that he does have cancer, and he is on chemo. It's his birthday on Friday so he's asked for hats/snoods/gloves/warm fleecy socks - all things he'd normally consider very boring - but under the circumstances, they will all be put to good use.

I will update you when we know more next week, but meantime thank you all for your kind words and for finding the time to reply to my post when you all have so much to deal with yourselves. Sending you all big hugs Diane xxx

[laura]

hi diane,,sorry that steve is having a tough time again, its so true that pc is such a rollercoaster.

i do hope for both of you, that the pain etc get sorted satisfactorily

what ever you do on friday with steve, i really hope that you enjoy being with each other, my thoughts are with you both, and your families, love laura xx