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

CancerCompass: RE: Unknown primary cancer site

CancerCompass: RE: Unknown primary cancer site
Response I wrote to some people at cancercompass.com

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.♠

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Update on Molecular Analysis

My biopsy analysis was pretty good,I guess. Not that they got any definite results! (AGAIN) Turns out the "best" match is that my cells/proteins/dna resembles primary liver cancer. But neither my Oncologist nor I think that fits. It Might if I'd ever had hepatitis A, but I haven't. Regardless, they eliminated all the other cancers like breast, lung, kidney, colon etc etc so even Dr. Dragovich thinks it's likely that I'll be around for a few more years at least - because it IS slow-growing whatever it is, and he's doing more research to see if it could be a combo-like cancer such as bile-duct AND liver somehow. He's going to talk to the pathologist again. Anyway, it's great news that it's not a cancer that seems to be in a hurry to do anything. More later....

I'm not sure where I left things! :) I don't think I even mentioned that they took a CT scan when I called back the next day and told them that pain pills were not doing anything!

So, ya, they took a CT scan to make sure it wasn't anything really dangerous - like bleeding. Nope, so THEN they took me up to the chemo center and IV'd me for 3 hrs or so with steroids to reduce the inflamation of my liver. They figured that the pain was caused by my liver getting too big and pushing on things that didn't like it! :)

The liver was inflamed from the biopsies. They poked me 3 or 4 different times all over. So..... that worked! I went home feeling SO much better and have been taking some more steroids via pills. I'm almost done with that now and there seems to be no after effects. so WHEW!! dodged a bullet.

The weird thing was sitting in the "chemo chair"! I got some very strange feelings and ended up crying and feeling very out of control. Told JB about it tonight and she said that it sounded like "post-traumatic stress". In a way, I guess because it brought up all sorts of powerlessness feelings and fear and all of that stuff. Feelings I'm sure I experienced when I was actually getting chemo, but were so bound up in the whole experience that I didn't realize how traumatic that whole thing is.
Very strange....

Ok, I admit it...Took the Steroids!

Another whole day at the doc's. Good news! had a CT scan that showed no major trouble. Got a 3 hr IV of steroids that shrunk liver back to size and stopped the really bad, can't breathe pain stuff. All looks good as of this eve. WHEW!!! Do NOT want to do that again! Thanks for everyone's prayers & good wishes :)

After effects of 2nd Liver Biopsy

I've been Up all night, sigh! I went to doc early today to see why I'm hurting so long after the biopsy. Who knows? Will be calling them back when it's late enough. New pain meds they gave me didn't do much. Fun and games!

While at clinic today, got first results from biopsy... no real news. Confirm that it IS an adenocarcinoma, but no new clues as to what kind. They've sent it off for molecular analysis and markers, but will take 2 more weeks. Have an appt then to find out. Told them no way to mess with my vacation, she said ok, can she come with? :) If they can identify some markers, will also indicate what kind of chemo works best.

One interesting thing. They first poked me mid-body near diaphram where CT scan showed a big tumor. Turns out they had to try somewhere else because the tumor there was necrotised (sp?) was already dead! Good news because that means some HAVE died over this entire 1.5 yr process!

Nano-probes for cancer?

gotta love nano-technology! Why we need MORE cancer research!

Nanoprobes detect and destroy cancer

Vacation of a lifetime?

My sister and I are going on a river cruise! In two months come hell or high water (or low water?)

This is a river cruise along the Elbe with Viking River Cruises. It starts with 2 days in Berlin, a transfer the river with a stop in Posdam. Then Magdeburg, Dessau, Wittenberg, Torgau, Meissen & Dresden Germany. Then a float through "Saxon Switzerland" as they call it, with a stop at Bad Schandau. Then on to Czech Repulic at Litomerice & Melnick. Then a transfer to Prague and 2 days there. Wow!

I'd been waiting 6 weeks to see my actual Oncologist last week. It was to be very exciting because they have re-decided to find out just what sort of cancer I have. They were going to send the biopsy they'd taken back in Aug. 2008 to a fancy lab that would look at it genetically, do a "molecular analysis" and see if they could find a better direction for treatment.

The long delay was to make sure that this lab had time to get the results sent back.

I thought I'd posted a note about my Oncologist appt the next day! I haven't been on in a few weeks and I see now that there's nothing there!

WELL, there was nothing "there" for my appointment, either! I was SOOooo annoyed and frustrated! Turns out that I guess the sample biopsy from 1.5 yrs ago when I was first diagnosed was no longer good enough, not big enough, I don't know, but it wasn't useable.

Instead of letting me KNOW that, though, nothing happened and I waited 6 weeks for nothing! Someone dropped the ball. They KNOW that cancer patients are always on edge waiting for results, how could they???

Anyway, I showed up for my appointment and my doctor says,"Well, let's really find out what you have". I said WHAT??? you were supposed to do that 6 weeks ago!!! They Should have called me and scheduled a new biopsy when they found out the old one wouldn't do. ARGUUUUHHHHHH!

So I am now scheduled for a biopsy next Friday, April 3rd. I'll have Another appointment on the 9th for results. But I already know that despite the fact that they plan to (again) send it off for genetic/molecular analysis, it won't be back in one week! I'd bet $100.00 on it right now! We'll see.

Sorry to keep everyone wondering what happened! Other than that, I'm hunky dory and planning the "vacation of a lifetime" in Europe with my sister in 2 months. I'll be DARNED if the cancer people mess that one up!

I know, life goes on

It's been a while. Life went on and on and I am happy that it does.
I had a wonderful/awful Christmas. I'm still healthy and so far without treatment.
I had a CT scan in Jan and something grew again.

Scary, awful, scary, awful, and more of the same.

I have finally had some pain. You have no idea how I do not want to report that. Pain means progress, pain means trouble, pain means pain.

I'm so frigging scared now I don't really know what to do about it.

The last CT scan showed some more growth. I'm pretty devastated about that. Add to it this feeling pain thing. It got their notice. I joked with my sister that heck, if I knew that reporting some effects would get their attention, I should have done it lots earlier!

So they decided that they should send my biopsy somewhere new to be genetically analyzed. Especially because my sis got triple negative breast cancer about 9 months after I was diagnosed. They are now wondering what kind of cancer I really have.

Gee, I could have told them that this was an important question a year ago!

March 19th I have an appointment with my actual oncologist. He's hopefully going to know what the analysis said, and depending on what they find out, hopefully have something more specific to treat me with. Having a cancer of unknown origin is the pits. They really have no clue what to do. The idea is, perhaps i really have breast cancer too! If so, they are all hot on some new treatment that is so far only approved for breast cancer. If somehow my reports can say that, they are all hot on giving me that trial drug. Sigh............ I don't know what to wish for.