Hi
Dianne I am sorry to hear about your husband. It is interesting that his doctors drain him, since the doc here said they wouldn't - I will definitely mention the paracentesis when I see him today. But i think that the health system here tends to be less interventionist than in the states. perhaps I can push for having it done at least once so she is more comfortable for the journey home.
Marion I agree it seems daft to let her out no better than she got in. I have told them about her being from abroad, and they seemed to suggest that we should make that trip as soon as possible.
I hope I will be wiser after I meet with the doctor. Thanks for your responses they are really helpful.
Dina

Hi mark and Lainy
Thanks for your replies. I did take her to the hospital, and after 30 hours, 2 X-rays and a ct scan, they've turned around and said there is nothing they can do. They have explained that her very distended abdomen is caused by fluids which are the result of lesions in the small intestines. Additionally there are lesions throughout the peritoneal cavity. I only got a brief resume from the doctor about it, and am going to get the complete picture tomorrow morning. But he said if they drain the fluid it will only come back tomorrow, and they might introduce an infection. she was in so much misery when I brought her into the hospital (by ambulance) that the idea of bringing her back home in no better state, and then finding a way to fly her back to Israel, is daunting to say the least. I was so hoping they could at least relieve her immediate pain and discomfort.

Is this kind of end a common one? I mean the horrible bowel problems and the pain and the obstruction and the distension? Is there anything palliative that we can do for her? How urgent is it for me to get her back home?

I realise this is clearly the beginning of the end, but if others have had the misfortune to see this kind of ending, it would be useful for me to know what the next few weeks have in store.

Thanks
Dina

Hi. My mother is in extreme pain for the last week, and it is hard to tell what is caused by the cancer and what is associated with all the meds she's on.
A brief history: my mom was diagnosed as CC (specifically gallbladder cancer, but it is apparently very similar to bileduct, and that is where her initial large tumour was) stage IV in april 2012, went through 4 months of chemo, then abandoned it as it stopped being effective. In November she was told she probably had 4-7 months, but that she could travel if she felt up to it. As I'm in the uk and she was in Israel, we planned for her to come for the holiday season. She travelled a week ago, but hasn't left her bed since she arrived. Her pain levels were increasing a bit back home, and she has lots of meds (mostly codeine based) to control it; but since arriving here she has had to double or triple some doses, and even then it doesnt seem to make much of an impact.
I have seen some discussions here about constipation, and I do think this is playing a role. Her tummy is distended. She is on laxatives although they are not helping much, and I think she can probably shift to taking them more often. She is barely eating and we are struggling to get much fluid in her, so it is hard to know how much we should expect her to 'go'. Similarly she has lots of gas, and she is also taking something for that (simeticone).
What I wish I knew is how much of her current (constant as well as intermittent sharp) pains are to do with cancer and how much are result of constipation? And if she is in as much pain as this, does it signal the beginning of an end? Is this one of the signs?
I have already been in touch with her GP (=family doctor) back home who is monitoring her day to day, and he recommended tweaking some of her meds. That helped a little although now it seems not to be working. If she has a severe obstruction issue, is this something that requires hospitalisation to sort out? Shall I try bombarding her with laxatives first?
Any advice would be much appreciated.
Thanks
Dina

Hello. I posted here many months ago when my mom got her diagnosis in April of stage IV gallbladder/bile duct cancer. She had four months of gem/cis from july-October, which initially seemed effective but then a new mass appeared and the oncologist said this was a sign that the cancer had developed resistance to the chemo regimen. That is just as well as the tollof the chemo was really starting to show on her, and as far as I was concerned we had reached a stage of the medicine being worse than the disease (in the context of the disease being incurable).  her prognosis is now 4-7 months.
The doc said she wanted to switch to a new chemo medication, one called xeloda, which she can take in pill form (2 weeks on 1 week off).
Has anyone had any experience with it? And specifically, given the dire prognosis, should we be questioning whether to bother at all? Are there any statistics associated with this, like it's effective in x% of patients, while y% experience serious side effects? I know that's a tall order, but I am troubled that the doc just pushed this as the next thing to do, without positioning the alternative very much. My mother is just so whacked from the gem/cis, and it's not like all this is going to cure her, so what is the point of buyng time, if that time is spent in misery??

Apologies for the blather...!
Dina

Dear Amy

This is exactly what is happening to me today. In for op, very optimistic, only to be told one hour in that it is inoperable and that there are nodules all over abdomen

Did they not suggest chemo at all to you, to halt the progress of the disease and maybe buy some time?

Dina

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Thanks Lainy. It's obviously so disappointing and really a shock, we didn't allow ourselves to go too far in considering this kind of scenario.

Does this even qualify as a CC?

I feel like I now need to learn about a whole new disease...

-dina

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Hi everyone,

Well the news was grim. We came full of hope, but one hour into surgery dr.choti came out and said sadly it's inoperable.

He now thinks it is gallbladder cancer which is apparently more aggressive than runof the mill bile duct cancer. When he went in he saw seedlings all around the abdominal area. So now there is no longer a cure, we can only attempt to check the progress of the disease.

Still a lot of unknowns, need to get the results of pathologies, and now need to be transferred to the care of a medical oncologist.

The doctor would not be drawn much on the 'how long' questions, it could be 3 months it could be 3 years.

Any advice?

Dina

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(12 replies, posted in Introductions!)

Thanks everyone for these wonderful replies. Gavin, I watched the webinar with dr Choti which was really instructive and interesting, and definitely gave me buckets of confidence in him.

I am curious about the mention of an epidural. Is that something they give pre-op, in addition to a general anasthaetic? Is it common practice or do we need to ask for it?

we are off to the hospital at 4:30 am tomorrow, so will let you all know how it goes during the day...

Dina

Hello
I've been reading through some of these great messages the last few weeks to try to get some idea of CC and what to expect.

My mother (68) has just been diagnosed with it, and they tell us the tumour is just a the bile duct bifurcation, mostly in the right bile duct. they have done 2 ercps, multiple ct scans and a few MRI scans for good measure. Still they can only say with very guarded confidence that they don't think it has spread.

She is being treated by the team at Johns Hopkins medical centre, specifically under the care of Dr. Michael Choti.

She is due to have an operation on Wednesday to resect her bile duct, gall bladder and two thirds of her liver.

First and foremost I was hoping to get an idea from others on this group what I can expect in terms of post surgery. I have been told she will be in hospital approx a week. Is this right? Will she be in great pain, will she be out of it most of the time? Will she be able to sit up in bed after a few days? What advice can you give me about things to have ready for her to make things more comfortable (for example I am getting a bunch of movies loaded onto an iPad for her to watch, is that realistic?). And longer term, how long, assuming all goes well and they are able to do the surgery, until she is on her feet? Is she likely to need a nurse to look after her at home?

Also, has anybody here had any experience of the johns Hopkins team? I think they are supposed to be very good and I got a very positive impression from them. We did go for a second opinion at penn medical centre in philadelphia, but they seemed much more pessimistic in general, about success rates of the surgery, and also about my mothers case in particular. Even though they were looking at the same test and scan results as the other doctors, they seemed to see something different.

Apologies for such a long winded post. And I also apologise if I am asking for info that already appears in another part of the website or message boards. Happy to be directed elsewhere!

Thanks
Dina