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

Nexavar...is it working?

What with the holidays and all, it's been awhile again.
I've had an interesting turn of events!!!!

I went completely off the Nexavar in Nov because it just kept bugging me. A constant sorta nausea, yucky stomach, itching, mild hair loss and didn't feel like eating much but chicken noodle soup. In hindsight it wasn't "That" bad, but I'd been so lucky with side effects that it really bothered me to feel so tired and ill. Anyway, they decided that I'd taken "enough" Nexavar that the CT scan coming up in Dec should give some indication if it was working or not, and that we could decide what to do from that. I was really pushing to try something different like chemo-embolization or heat or freezing the tumors... or something!

Ok, so the results came back and AMAZINGLY it showed some shrinkage!!! Not a lot, and apparently here and there, but I have not EVER showed ANY shrinkage in 2 1/2 years!!!!!! I've asked to have a copy of the entire scan report mailed to me so I can really go over it myself, but it's not here yet.

So..............I'm back on Nexavar again.. Not happy with that, but HEY! so far it's the only thing that has done anything for me, so I'm approaching it with a bit of a tougher attitude. I got back on here and some other cancer sites and realized that as far as negative results from treatment, there's a LOT worse than I've experienced so far and with a little proof that it might DO something (after so long w/no signs) I am motivated.

Anyway, I'm only taking one pill a day (1/4 dose) for two weeks and then we'll meet and see how it's going. So far it's been one week and besides itching I'm doing ok. I can see now how the stomach problems go - I HAVE to have food in my stomach during the day - mini meals - or I get a sick feeling like a bombshell. That's not my meal eating style at all, but I've stocked up at work with soups and crackers, applesauce, etc. and that seems to help.


Went home to Minnesota for Christmas week and had a great time with my sister and brother and his family.

Couldn't BELIEVE all the snow, but it was fun. Back in Arizona it's been in the low 70's so that's nice too! :lol: