CancerCompass: RE: Bile Duct Cancer Year 2010

CancerCompass: RE: Bile Duct Cancer Year 2010
A post I recently made on another cancer blog. Since I've been so lax here, I thought I'd post it.


Hi Leonard,

I know my situation sounds weird, but I have heard of a couple other people with similar experiences. At the cancer center I go to they have one other person with a similar experience. Definately NOT the expected path for bile duct cancer!

I was diagnosed with cancer of unknown origin first. During a CT scan for my lungs (I had a persistent cough) they found 4-5 tumors in my liver. They did a biopsy and came up with bile duct cancer. Clearly it was not blocking my bile duct as I had no symptoms of any kind.

I went through several chemos including gemcitibine, cisplatin, and others I can't think of right now. Since my tumors are inside my liver, that means it's intrahepatic, and not a good candidate for surgery. Having multiple tumors doesn't help. So anyway, later on they did another biopsy and sent it for some genetic testing and comparisons with other kinds of cancers. Meanwhile I was on oral chemos like Zeloda and lately Nexavar.

The test came back still unclear as to type of cancer, but the best match was liver cancer mixed with bile duct cancer. It's called cholangio-hepatic. No one really thinks I have liver cancer as I've never had hepatitis, my liver functions are great, no cirohsis (sp?) nothing to indicate any damage to my liver. So.... here we sit.

I've had CT scans every 3 months from neck to pelvis for 3 years now. Nothing grows (much), nothing shrinks, it just sits there in multiple tumors ocassionally causing me some pain but that's it.

Does that make things any clearer? Still the best guess is bile duct (mixed with some liver cancer cells) but clearly slow-growing.

I'm off all chemo right now, and will be for a second three month stretch until September when I have another CT scan.

With 2 biopsies now they are sure it is cancer, so no reason to go there (too bad!) it's just an oddly progressing type I guess. Someone else who chats on these boards has shared similar experience to mine, but I haven't heard from them for awhile.

It will be exactly three years on August 1st. :)

Patti

So much for that thought

Update
My 1993 Subaru died! Right in the middle of an intersection! Had to get a new(er) car, so I picked out a 2008 Pontiac Vibe. You can see from the pics that they sure look similar. The Vibe is very nice though, good gas mileage, safe car and kinda cute!


Early September 2009 I had my latest CT scan, after a summer off of all treatment.
Really hoped to continue THAT situation, but unfortunately they detected some growth.

I still don't know exactly how much, but bottom line they explained that there's been "enough" growth since day one to now feel I should go back on chemo. Pretty devastating news.

We're trying Nexavar - an oral chemo used for kidney cancer and recently approved for liver cancer. Since I "sorta' have liver cancer they think it might do some good. We'll see. After the 1st 2 weeks I was up to there with side effects. Couldn't eat much, felt lousy, pain in my sides, skin rash all over and my poor head! I couldn't even touch it with a comb or brush, yet it itched like crazy!

So they pulled me off it entirely for a week and now I'm back to taking 1/2 the regular dose. 2 pills/day vs 4/day. So far so good, but it's not even been a week yet.

Bottom line I guess is that I'm back in it again. I'm praying that everything stays as slow moving as it has been and that I don't get sick from the cancer itself.
We'll see! Best to all
Patti