Hey all,

Well I haven't posted on here in a while but I do check in as much as I can. Life is so hectic this side of the pond that I hardly have time to breathe at the moment. 

Recap on Mum's treatment to-date. Diagnosis: ICC stage 4 - contained within the liver at present. Three rounds of gem/cis - stable disease. Then a little wait to have some more scans and consider the ALPPS procedure (two-stage liver resection), but in this time a few more satellites grew, so surgery is currently out.

Next stage, today, our surgeon is considering SIRT, and the board meet in two weeks to consider Mum for this treatment. They want to see whether they can downsize the big tumour on one side of the liver, and then remove it. Then another dose of SIRT on the other side of the liver, to hopefully downsize and remove. I guess that this would be the absolute best case scenario but we're not holding our breath as nothing has worked out so far!

Anyway, i'm wondering whether anyone has any positive experiences with SIRT? From what i've read on here before, there are some variable views as to how effective it is. Saying that, we currently have no other options as the NHS is pretty limited it seems.

In good news however, Mum continues to be symptom-free. Long may this continue!

Best wishes to all,
Jules

Fantastic news! smile  Here's to a speedy recovery!

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(21 replies, posted in Good News / What's Working)

Wow, what a great report! Fantastic news. My mum is currently considering either SIRT or IMRT, for a tumour the same size as Mark's, also confined to the liver - this report has given us such hope.

Best wishes and continued good news for Mark!

Hello all,

Sorry for a bit of a delayed reply and thank you so much for all of your thoughts. We have deliberated and the current plan is to just wait for my Mum to have her next PET and MRI (mid Feb), then both surgeons are going to look at the scans and battle out the question of surgery amongst themselves. I think that my Mum wanted to avoid getting a third opinion as she’d like a little break from it all - it does get so confusing. Pam, I think it is the same op as Lauren had. I guess with such big surgery and also it being relatively new, there are going to be big differences in opinions. Like Lauren, my Mum would likely opt for a chance of a normal life, so I think she’d give it a shot if the surgeons give her the go-ahead!

If surgery is not an option then the next step is apparently SIRT. We’ve been looking into IMRT and TACE too, but not sure if these are available in the UK for Cholangiocarcinoma. I’ve tried to have a think about which treatment would be most appropriate for Mum but it does get very confusing and the research varies so much. If anyone has any opinions on these treatments then please do pass on your thoughts.

Also, Porter, am I right in thinking that your surgery is next Monday (27th)? If so, good luck. I will be thinking of you and sending loads of prayers your way.

Jules

Thanks Lainy, I thought that you may say that smile Unfortunately I wasn't able to be in the appointment with my mum today but I was shocked by some of the things he said to her. Along with the funeral comment, he told her that her liver was a 'shot to pieces'. I work with patients in my job too, and i'd never speak to people in this way. Luckily my mum is a tough cookie, so she takes it in her stride, but a lot of people would be really damaged by these insensitive comments. Arrrrrrrgh, I feel a rant coming on but I will resist!

We love surgeon number one, not just because he thinks that surgery is possible, but because he treats my mum like a human being and even if he's delivering bad news, he does so with so much respect.

Hello all, today we have been faced with a second opinion about surgery, which has thrown us completely off course.

In brief, my mum has ICC. It's a very large tumour and we currently have a surgeon who is lovely, very unassuming, with a great reputation, who says that he can take it out. To do this he wants to use a new technique called ALPPS, where they do the surgery in two halves, and wait for the liver to regenerate after the first op, before performing the second.

Today my mum was called in for a consultation with a second surgeon, who was very pushy, and said that 'she may as well choose her funeral songs' if she decides to go ahead with the surgery. He said that she would almost certainly die during the surgery as the liver may not regenerate, and if this happened, there wouldn't be enough liver left to sustain life. He has suggested SIRT instead, but didn't say particularly positive things about that either.

Now my mum feels very confused, and upset. She isn't sure who to believe. We don't really want to bring in a third surgeon to add in another opinion as it just seems to make her feel worse and more confused. I had heard that sometimes the liver doesn't regenerate but my understanding is that it is pretty uncommon? We feel at a bit of a loss and very deflated.

Any thoughts or advice would be greatly appreciated.

Jules

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(20 replies, posted in Good News / What's Working)

Wow, that is such FANTASTIC news! Best of luck for surgery smile

Yay Kris, great plan! Do let us know what your onc says - i'm very intrigued.

Thanks for these Gavin, it looks very interesting. I wish they would trial it on some cc patients.

Dear Milena,

I am so very sorry to hear about your beautiful mum. Life is very unfair at times and you sound as though you were very close to your mum, which is something to cherish.

Although she is not here in body, she will stay with you always, in your thoughts, in your dreams and in your heart. She is part of you, and that will never change.

I second what Darla said, please don't be too hard on yourself. Many of us find it very difficult to talk with our loved ones about death; it is a natural part of loving someone so much and never wanting to be without them. You did the very best for your mum in extremely tough circumstances, and I'm sure that she knew that.

Many thoughts and prayers are headed your way, and you have a lot of support here.

Hugs,
Jules

http://metro.co.uk/2014/01/05/pancreati … m-4250777/

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(7 replies, posted in Good News / What's Working)

Wow, this is fantastic news! I have my fingers and crossed for you that surgery is a go!

Hi Percy,

I'm very interested in immunotherapy but unfortunately I am unable to access the articles. Is there any other way I could access them?

Best wishes,
Jules

Love this! What a great article.

Hi Gavin,

Thank you. No, mum has intrahepatic CC, stage IV.

Jules

Thanks for posting this info. Marion. We are both excited and terrified about this operation. It's scary that there is little knowledge about long-term outcomes but on a positive note, our surgeon has just performed it on an 85 year old man, who survived and is currently doing well. Any thoughts from other members would be greatly appreciated.

Jules x

Hi all,

We've just had a very hopeful letter through from our lovely surgeon, saying that the surgery he plans to do on my mum is a new technique called ALPPS. I understand that it involves two ops, firstly to clear one side of the liver of tumours - this side is then left to grow for a week or so. The second surgery involves removing the remaining 80% of the liver containing tumours.

Has anyone had any personal experience with this surgery?

Thanks, Jules

Hey Lainy,

Festive greetings from across the pond!

Wow, how interesting, maybe these meds are working for you. Fantastic on being five years cancer free, that's great great news. We're certainly going to consider this treatment, if we run out of options.

Things are currently going okay thanks - we're really looking forward to the holidays.

We're holding our breath at the moment as my Mum is on a few week chemo-break as she has a bad cold and her Onc wants her to recover before she re-starts treatment. Other than that, amazingly, she seems pretty well. We'll then be holding our breath again, as she will be reassessed in Feb for a pretty major surgery. All we need is for everything to stay nice and stable. We have the most wonderful surgeon, and we feel blessed to have found him (and we did so through this lovely board!).

Jules

http://www.express.co.uk/life-style/hea … -treatment

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(12 replies, posted in Good News / What's Working)

Thanks for all the good wishes guys!

Jules x

Thanks Kris and Percy for your prompt replies. They both answer my question! I will pray that whatever happens, my mum's tumour continues to grow very very slowly. I like the idea of viewing it as a chronic disease - it takes the sting out of it somehow!

Best wishes,
Jules

Hello lovely people.

I have a query about recurrence after surgery that i’m not too clear about. I wondered whether someone may be able to shed some light. I understand that recurrence after surgery is very common, particularly when the disease is advanced. Does it seem to be the case that when the tumour reoccurs, it grows at a faster rate than the original tumour, or does nobody really know the answer to this? I know that this cancer seems to follow no rules, so this question may be hard to answer.

The reason I ask, is that we are waiting to hear whether my mum can have surgery, after she finishes chemo in Jan/Feb. We reckon that mum’s tumour has been growing slowly for years. We think this largely because there were potentially a lot of warning signs and symptoms that we stupidly ignored. Our surgeon and Oncologist feel that it has been there a long time too, partially because they observed the tumour as being stable for four months, before any treatment began. They consider this to be pretty slow! Given that it is so big, and given this slow rate, it is possible that it's been there a while!

So, we would hope that if she has surgery, and when it comes back, that it does so at a snail’s pace, but I sense that this is usually not the case from a lot of the posts i’ve read?

Hugs to all,
Jules

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(9 replies, posted in General Discussion)

Hi Porter. I just wanted to chime in here and say what a great attitude you have - I love a fighting spirit.

Also, my Mum’s tumour is a similar size to yours (15cm x 9cm), with a few satellites. However, she has recently been told that surgery IS possible if the tumour stays the same size on chemo. I’m not sure whether this is to do with location, a bit of a daring surgeon or what?  The surgery in question involves a first operation to grow a portion of the liver (so that  there is 20% of “healthy” liver to support the body), and then a second surgery to remove the remaining 80%. I wonder whether this may be possible for you too?

Best wishes,
Jules

Ps, in general Mum seems very well. She has good energy levels, is eating well and seems very positive. It's quite remarkable given the extent of the tumours! We are very thankful.

Hello,

We've had no shrinkage at all unfortunately. The main tumours and satellites have remained stable so far. The surgeon reckons that he can grow a bit of healthy liver and then cut away 80% of diseased liver. He just wants to check that the tumours stay stable for a bit longer and for mum to complete her course of chemo.

Re your dad, and the attitudes from Sheffield, that's truly terrible. We've encountered negativity like that too. I sometimes wonder whether the medical staff remember that these 'patients' are also human beings, mothers, fathers, daughters etc. Hopefully Leeds will be more compassionate with your Dad's situation. My understanding of palliative care, according to some of the good nurses that we have seen, is that they will never say that "nothing can be done". There is almost always something that will help make patients more comfortable.

One thing that I have found pretty challenging is that in the US there appear to be far more options with chemo and clinical trials etc. It seems that in the UK, the docs are very limited in the treatments that they can or are willing to offer. Have you found this too?

Jules