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

I've been remiss - on chemo vacation

I see I've not blogged for a long time! wow!

My last post was about the genetic testing they did, and that nothing really new came from it except that they eliminated all sorts of "other" cancers that now it is definitely NOT. Ok, so what is it?

They have a name for my cancer now (after 2 yrs!) At least this is the latest incarnation. It's called CholangioHepatoma (means part liver & part bile duct cancer, but all mixed together in each tumor). If I thought bile-duct cancer was rare, this really takes the cake! Having two kinds of cancers in the same tumor is quite a stunt I think.

Regardless, my Oncologist says that he thinks I am acting "dormant". Meaning, as we've been told forever, nothing is growing (much)and nothing is shrinking at all despite 4 different Chemo attempts and a year of chemo pills. The good news of that is that I am on vacation from chemo. I've not had anything all summer!!!!! Now, in September I'm feeling sorta 'normal'? Better, anyway. At the end of the month I have a CT scan scheduled and will meet with my Onc 1st week of October.

Emotionally or mentally, this has caused a change in my attitude. I've found myself doing things that assume I'll be around for awhile. I'd ask Dr. Dragovich if I could believe from his comments that my prognosis could be for three years? and he said yes. Now the problem is... did he count these first two????? :) I'm gonna say Yes!

So, I've been "feathering my nest", purchasing some actual furniture accessories, etc. I took the vacation to E Germany and Czech Republic - still owe some pictures here!!! (I forgot!) and even went to the dentist!

Now going to the dentist doesn't seem very odd, but in my mind while I knew I had some dental problems, why get into it if I'm not going to be around very long?

When I found myself in the dental chair agreeing to have a tooth pulled and making plans to get a bridge, I had a sort of bubbly champagey feeling....Wow! I must think I'm going to survive!!!! That was very strange after two years of thinking any day now I'd be down for the count.

So I'm liking this vacation and hope it lasts a GOOD LONG TIME!
Here's a picture of my sister in Prague and I in Germany.♠