Back in Hospital...

Well, tube change didn't go all that well as it turned out. An infection developed (I reckon they should have given me antibiotics on-board before the procedure, but that's just me), and pain was building up on Wednesday evening and I started to get a fever. By Thursday at 7am, I called in and they recommended that I should hook up my external bile bag again. As soon as I hooked it up, pus laden bile started pouring out. That took of the pressure and relieved some of the immediate pain, but of course it was clear I has an internal infection going on in my liver.

We checked back into the stretcher bay in the cancer clinic, and after giving lots of blood samples and bile samples, but mostly just waiting around all day... I was admitted as an inpatient. I started on antibiotics and this morning I had a HIDA scan - which was quite interesting, as I could watch it over the hour it took to do. Basically they injected me with some radioactive markers that would be moved by the liver from the blood into the bile and then watch to see how the bile would drain - if at all. It showed that my bile was again draining (mostly) properly internally. Although it also showed that the left portion of of my liver is not doing much anymore - not processing much blood at all.

Anyway, I am out of danger I guess, but I need to be on antibiotics every 6 hours all weekend, so I am just out for a short leave of absence at the moment. On Monday we will see about whether or not something further should be done with my plumbing.

Tube Change

Well, I thought there wouldn't be much to report, as I was really just expecting a few hours for the chemo and then going home, but I ended up spending more than 8 hours at the hospital today.

I got the epirubicin injection, which went fine, but because I have had all this pain on my right side, it was arranged for me to get some more blood work done to check my bilirubin levels, which have actually come down (I am surprised by that), and then to go to interventional radiology to have my biliary drain checked out.

So down in interventional radiology they injected a marker into my capped-off external bile drain and saw (on the lcd screen which I could see nicely showing up my sad damaged biliary tree) that my internal drain had blocked off - it was no longer flowing through the right drain down towards my bowels. So since the doctor was there anyway, and I was on the table ready to go we decided to just go for a tube change right then to replace the internal stent (still a size-10 I believe) and also the external drain.

The procedure was short, but unfortunately brutally painful. I didn't have any prep of extra painkillers (although I am on a light dose for the tumour in general), and no sedative or anything, so I was sweating and gritting my teeth. But I made it through the other side obviously, and most importantly, he got it done, and also managed to do it without knocking out the left drain (which was a significant risk apparently). So, I am very glad we did it, and I hope that it will eventually relieve all the pain from the side I have been having. At least for as long as it continues to work.

I now have to flush it twice daily with saline which is presumably something I should have been doing these last 3 weeks since getting it internalized in Vancouver. When I left Vancouver it was capped off without the valves that I have now, so I guess they were just hoping it wouldn't get blocked during the 5 weeks before the suggested scheduled tube change. Since I just did the tube change, I am not now due to change it again for 3 months... well, unless something else goes wrogn.

Anyway, on the chemo -> nausea front, I feel good so far, I am hungry and eating, but taking stemetil (prochlorperazine) just in case anyway. I am optimistic that I can avoid puking this week.

Move to London, Ontario & Starting Chemo...

So, since March 8th, I have moved to London, Ontario and have started treatment here. One major difference in my planned treatment is that the chemo regime is different and more aggressive that the usual palliative chemo that is often suggested. Also we are going to do local radiation treatment as well - to the liver and surrounding areas - to cover the spread to all the lymph nodes. The hope (and not sure how plausible this actually is) would be to shrink down the tumour(s) to the point where resection might become an option again.

My chemo treatment regime is a high dose of cisplatin once every 3 weeks along with a continuous drip of 5FU being fed through a (very itchy) PICC line in my right arm, also a dose of epirubicin once a week (because my bilirubin is still high >40) we can't go too high on the epirubicin - at least not in one shot, apparently.

So, last Tuesday I got my first chemo - which lasted 5 hours while everything dripped into me, and I walked out feeling not too bad, but by the middle of the night I was vomiting, and the next day I was a wreck. Taking drugs (I am on 8mg of Odansetron + 4mg of Dextramethason (a steroid) every 12 hours for nausea, and then Stemetil every 4 hours as required (it was) to stop the nausea and drugs to fight the pain and then the chemo itself, and still feeling wiped out and nauseous - ug, not fun. But, by friday it seemed like everything was basically over. At the moment I have a good appetite.

The major annoyance right now is that the capped off bile drain that is still sticking out of my right ribs seems to be rubbing internally or something, and causes me sharp pain if I use my ribs too much, i.e. if I breathe heavily, or laugh, or burp, or hiccup, or move... Starting Saturday night this pain was ramping up and I decided to try to deal with this pain by taking lots of my "breakthrough" painkiller PMS-Hydromorphone which resulted in little reduction of the pain, but a huge increase and resurgence in my nausea. So Sunday was an endurance test
of nausea again - it was miserable, frankly, and felt like I was waiting for each minute to pass. Today has been largely better - and I am in good spirits.

And tomorrow, the chemo starts again... although, tomorrow I won't be getting the high dose of cisplatin, so I hope the effects will be much less drastic this time.

Backstory - my posts to LIVER-ONC

Ok, my first blog post will be a straight re-post of the messages I posted to the liver-onc mailing list.

Date:	Sat, 8 Mar 2008 11:33:46 -0800
Sender:	The Liver Cancer Support Group
From:	Lachlan Paterson
Subject:	Introduction / Diagnosed with Cholangiocarcinoma

Hello,

I was recently diagnosed with cholangiocarcinoma. I am 37 years old, and otherwise in seemingly excellent health. I had no previous liver damage. I don't smoke, I'm not overweight, no cirrhosis, nor hepatitis, etc. My symptoms started presenting like classic gallstone symptoms. I was happy and healthy until Jan 30th, when I suddenly had severe abdominal pain. The pain dissipated, but I was left with cramping, and over the next 10 days I slowly developed pale stools and darkened urine, until finally on Feb 9th, I was quite obviously jaundiced and checked into my local emergency. The severe pain turned out to be a red herring (still unknown actually), since the cause of the jaundice (as discovered by ultrasound and CT scans) turned out to be a tumour right in middle of my liver where the bile ducts meet to drain into the common bile duct. So ignoring that inital night of pain, 10 days later, I was basically presenting as "painless jaundice" at emerg.

The initial treatment was to try to drain the bile backing up into my body. The first attempt at an ERCP failed because the tumour was blocking the access to the ducts, so much so that they couldn't put a stent in for drainage. So, instead, with another procedure, I got an external drain from the right side of the liver out through a tube between my ribs and then into a bag. It was after that treatment that I was told it was definitely a tumour, and probably primary cholangiocarcinoma. I was told it was not resectable due to the size (4cm) and location (near major arteries and veins) of the tumour, and the probable spread to lymph nodes. (they were seen as enlarged on the CT scan - which wasn't conclusive evidence at the time).

Since I was in Victoria BC (a small city) the surgeon there said she had removed liver tumours, but never one in as difficult place as mine, but she suggested that we hold off from putting in any internal stents so as not to disturb the tumour in case it was still resectable because a surgeon with more experience in Vancouver might be willing to try it. After a 10 day wait for the transfer (no bed space available), I made it to Vancouver, and then had more tests. Another CT scan, and a PET scan, an endoscopic ultrasound and a biopsy of the nodes near the tumour (the cells are adenocarinoma) and one of the enlarged local lymph nodes. The surgeon in Vancouver said that even if there was some minor spread to local lymph nodes, resection might still be possible. Unfortunately the tumour has spread along the hepatic artery and the spread to my local lymph nodes quite a bit. It is possible to reconstruct the bile ducts, and it is also possible to reconstruct the hepatic artery, and since the liver grows back it is possible (if it is otherwise healthy) to remove much of the liver and still be ok. But, the combo of all of that plus having a lot of spread to the local lymph nodes for me meant that resection wasn't a good option, and would likely make things harder. Here is the quote from my discharge:

"Healthy 37yo found to have cholangiocarcinoma. 4.3 x 3.5cm in segment 4A/4B extending to porta hepatic lymph nodes with vascular encasement"

"Pathology - adenocarcinoma"

At the Mayo clinic: http://www.mayoclinic.org/bile-duct-cancer/ they do whole liver transplants for cholangio but not if it has spread outside the liver, which mine has (to the local lymph nodes).

So, now I am looking at starting chemo about a month after first going into emergency. At least I am out of hospital for now - that is something to be happy about. The recommended chemo regime in Canada is apparently gemcitabine & cisplatin. I will be starting that soon as a first round of chemo. It will be whole body (as apposed to some isolated liver-targeted treatment) because I need to fight it in my lymphatic system too.

I would be very interested to know of new trials going on. I know in Canada that Princess Margaret Hospital in Toronto is really the centre for this. There is also quite a lot of research in Japan. Google is not so useful for medical research since most of it is not online for public browsing, at least a far as I can tell.

Every friend and acquaintance I know seems to have heard about some kind of wonderful treatment, mostly unproven, and mostly related to cancer in general and unrelated to cholangiocarcinoma in particular. I am certainly willing to be open but there is no way I would bet my life (yet) on a total unknown. That said, I am collecting all the ideas I can get.

I know the prognosis is dismal, but while I feel strong I am willing to fight this as much as possible.

-Lachlan

Date:	Mon, 10 Mar 2008 16:17:39 -0400
Sender:	The Liver Cancer Support Group
From:	Lachlan Paterson
Subject:	Re: Introduction / Diagnosed with Cholangiocarcinoma

Thank you Robert for your story and that info. I am going back and forth between my efforts to research/fight this as best as possible, and my efforts to avoid thinking about it and distract myself sometimes.

I should add that at the end of my hospital stay in Vancouver, we went ahead with procedures to put in a stent to get my bile draining back into the common bile duct. I still have a drain out my side, but it is capped off. My 2nd ERCP was again unsuccessful at getting a stent in, but a couple days later the radiologist managed to get one in, using the side door (so to speak) though my ribs. It was the right call by to the docs in Victoria to back off and not put in the stent, until after the Vancouver surgeons took a look at me.

Now, just 5 days later, I have left Vancouver, not because they weren't doing a good job, but just because here (in Ontario) I can be supported by my family which will make my outpatient life a lot easier. With some codeine to numb the remaining pain from the procedure - the flight wasn't as bad as I expected it would be. Anyway, as a result of moving, I will indeed be getting more opinions on everything because I will have a new set of doctors.

I am pretty convinced that it is not resectable at this time, as they (the surgeon's team) said they were willing to be very aggressive, but then after getting all the imaging, it was deemed not a good idea. But that doesn't eliminate the possibility that after some treatment, I might be in a better position for resection in the future. Nevertheless, I will indeed get another surgeon here to look at my imaging too (I have the images on a CD). On the treatment front, I am lined up to meet with an Oncologist here and also a doc for possible radiation - trying to figure out what treatment plan is the best.

-Lachlan