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:

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.

more pictures

Pics from vacation in Wisconsin

Here are some pictures from my vacation with my family in Northern Wisconsin.

Catching Up

It's been awhile since my last post. That's because things are at a standstill. I'm no longer taking any treatment. No chemo, no pills. And I won't be taking anything until December 2nd when I have another CT scan, and the 4th when I will review that scan and have blood tests.

Seems that whatever is going on with me is Not a rapidly growing cancer. Nothing has really changed since I was diagnosed back in August 1 2007. Seems strange, when at that time they told me I was Stage 4 terminal, non-operable, cancer in my liver. But,,,,, guess what? I'm still here.

I've not had any Xeloda, or any treatment for a few weeks now, and my body is definitely detoxing. I'm sleeping like crazy! I don't "feel" exhausted, but if I dare rest my head, I'm asleep. My skin is also going nuts. I itch. My skin has pretty much pealed a layer. My eating patterns are disrupted. I am craving sugar. Even if I eat sugar, I have no energy. I've been working about 20 hrs/week, and am exhausted when I come home. I nap. Then I go to bed and sleep. Weekends are mostly slept through. It's weird.

My sister has been going through crises and she didn't tell me until it was defined, at least somewhat. They found a new spot on her lung and went crazy. It was a new thing, looked like cancer. If she'd metastasized from her breast to lung it would really be bad news. Fortunately they say now that it's not cancer. She had a lung biopsy that sounds hellish. They then tested her for TB, so far, not that. More tests, some which she'll find out about on Monday. God Damm!! She shouldn't have to go through this and I'm so unhappy that she went through a weekend of thinking she'd metastasized and didn't tell me! I get why she didn't but I still feel bad.

If you can't go through cancer with your sister who also has cancer, who the hell can you share it with?

We've found a neet thing tho. We are both on Skype and have video cameras. It's so fun to SEE JB while we chat! Everyone should do this! Other than buying the camera (her's came with her new laptop, I bought one) it's FREE! What a treat!

Life otherwise goes on. I'm trying to figure out what to do about Thanksgiving... I'd love to go home but it's not really in the cards. For Christmas I'm going to Chicago and staying with my daughter, Tara, I can hardly wait for that! I bought my ticket last July, when I still thought that I might be in hospital by then, maybe dead. It was such a leap of faith! But here we are almost to the middle of November and I'm so fine! What a gift! Until you have really believed that you have not long for this world you cannot imagine what it feels like to think that you will be around next week. Trust me on this one.

The only things I think about these days is my family. Tara is the biggest, of course, but so are my brother and sisters. It breaks my heart that my youngest sister, Susan, is not "with" me. She's only a few hours away, yet she doesn't talk to me. She, i have to say it, ripped me off this summer. I'm unhappy about that and I wish so much that she'd talk to me about it, but she doesn't . I did finally get a generic email when she moved to Bisby, AZ, and one or two more, but so far, she is apparently in denial. She won't talk to me. We've not talked since June, when I let her live in my house when I moved to my new apt. Double rent thing... She has no clue what's been going on with me, or Janel, I gather, since then and apparently doesn't care. She wrote me in an email that I could "tell" her what's going on, but didn't ask any questions. As far as she knows, I could be on death's door. Last June I was thinking about my funeral! I know many people have family issues like this, but to me, it is the most hurtful thing I can imagine. Apparently she just doesn't care.

I know she has her own health issues, but the point isn't how self-involved you are, it's what you feel about others. I wrote her an email, talking about how hurt and disappointed I was. I said "they" and "You guys" to soften it a bit, but was talking about Sue specifically, She wrote back sort of excusing the others _ Janel has cancer after all --- but obviously missed the point. Broke my heart and to this day I've not responded. How can I tell her that SHE is breaking my heart when apparently she doesn't have a clue? I dunno.

Family stuff, I guess. Totally unbelievable how much it hurts.

Back to "Real" Life-

I'm back from my vacation in Minnesota and Wisconsin, back to real life! Sigh. It was SO wonderful to be at a cabin in the Wisconsin north woods! My sister, brother, sister-in-law and their two adult children all went for a long weekend at a friend of my sister's cabin.

The place itself was pretty basic - actually partially under re-construction, but it filled our needs and had a great deck and view of a small lake. Jessica and Jason got fishing licenses and spent time catching (and mostly releasing) fish to all of our enjoyment. We mainly just "hung out". Everyone had a book or two to read while lounging on the deck, Ken, my brother built fires and we even made S'mores. Wow, are they sweet! but delish! The full moon bouncing off the calm lake water was beautiful! And I GOT TO SWIM IN THE LAKE!!!!!!! Yes! Another thing from my "list".

The rest of the week I was there I spent with my sister, Janel, who, as I've mentioned, is also going through cancer treatment. We compared notes a lot! This is so good to be able to do! By sharing stories I at least discovered how many "little" things that I experience, she has also. For example, I thought that the food aversions they warned about on chemo would be some big deal thing. I didn't realize that the smaller, "oh ick" feelings and blah, don't know what to eat stuff is part of the same deal. When you live alone, you don't find many opportunities to share the "small stuff" that goes on every day with chemo and cancer. I'll have some pictures soon, I hope!

Here's a picture of Janel wearing my purple wig - from her last visit here:
\
You can see how we were raised as twins as children - there's ony 18 months between us!

My niece and nephew were great to spend some time with too. They are such great people! I really relished having some time to just sit around and talk about "stuff" and get to know them as adults. Same for everyone, really. Everything was so relaxed and casual, it was just really special to have that time to get re-acquainted and bond a little! Thanks guys!

Now that I'm home, I'm stressing a bit about the PET/CT scan I'm having on Thursday. My Oncologist appointment is Sept 4th, when I'll find out the results, but just doing another PET scan gives me the willies. I cringe at the thought of being in that tube again! EWWWWIEEE!

We're hoping to find out that the changing colors/shades inside some of my tumors means that the cells are dying inside. They have not shrunk, but it would be a miracle if the chemo is killing the cells anyway! My Onc's assistant also confirmed that they really don't know for sure what kind of cancer I have. (I didn't think so!) She told me that perhaps IF the biggest one on my left side is still really active, that they might consider another biopsy. I think I would really like this! However, I also think that the asst. is much more enthusiastic about investigation than my actual Oncologist is. I could be wrong, but she was excited when I told her about Janel's triple-negative breast cancer and thought they might do some genetic testing. Dr. Dragovich didn't, however, apparently because it wouldn't affect my treatment in any case. Oh well. Another thing he probably takes more to heart is that my Medicaid probably would refuse to pay for it.

She did stress that I make sure to tell my other family members (especially my niece and nephew) to be diligent about their testing and preventative stuff, which I did while there. She said that a genetic link was awfully likely given that both JB and I have cancer so "young" (under 60yrs old). Gee! we're Young in the cancer world I guess.

I didn't get to see my therapist this week, bummer! But she was out ill. I'm not going to be able to see her until Sept 4th either - a LONG time since our last appt! I had to meet with the "pill person" this week too - the one who prescribes my anti-depressants. Turns out she's left the clinic I go to, so I had to tell my whole story to a new guy. He wants me to add a small amount of Zoloft to my Wellbutrin. He explained that it hits a different area and might help with my low feelings. We'll see.

Going back to work was hard. I felt so out of it, though by next week I'm sure I'll be feeling back in the swim. Just getting back into a routine is depressing. Thank god I love the people I work with! I'm even getting a raise next month - my three year anniversary! That just blows me away - It's been a year of cancer, three years of a job and two months in my new apt. Time flies!

Next I'm looking forward to spending Christmas with my daughter in Chicago. Handling snow and cold weather ought to be a trip! Last Xmas she was in LA so we had sun! She's talking about coming out here, maybe in October, which would be great - I can't afford more travel - both because of $$$ and keeping my job. I'd love it if she came out here, especially now that I have a place to live that is "decent' and air-conditioned!

Enough for now, I'm burnin' daylight!

Living with Stage 4 Cancer

I found this article posted on a new website that I'm very interested in and excited about. It's called http://www.livingwithstageiv.com/

It is presented as a Guide for friends and family, it seems to me it's also a tip sheet for survivors in ways to stand up for their own feelings.

GUIDE FOR FRIENDS AND FAMILY

If I should lose my hair because of my treatments,
PLEASE DON’T say “It’s only hair” or “But you have
such a beautiful face”. My hair is a part of my identity,
my sexuality, my feelings of who I am as a woman. It’s
a part of me.

PLEASE DO say “I’m so sorry that you have to go through
this”, or I can’t know how you’re feeling, but I’m here to
listen if you need me.”

REMEMBER I am not only losing my hair, I’m also afraid
and fighting for my life. My hair is just the outside expression of what is going on inside my body,
and I’m reminded of it every time I look in a mirror.

If I should express anger or depression, PLEASE DON’T say “You have to stay positive” or “Let’s talk about the good things in your life”. Accept that I ‘m afraid, lonely, anxious and in pain. I NEED to let these feelings out.

PLEASE DO show me you are willing to listen. Don’t feel you have to “fix it”. Don’t worry about saying the “right” thing, it’s ok to tell me you don’t know what to say .

REMEMBER no matter how supportive you are, my feelings don’t disappear when I hang up the phone. Call again tomorrow to see how I’m doing, or drop a card in the mail to say you’re thinking of me.

If I say I’m tired, PLEASE DON’T say “Who isn’t tired?” The tiredness I feel from my treatments goes beyond fatigue.

PLEASE DO ask “How can I help?” or “I made an extra tray of baked ziti? When can I drop it off”.

REMEMBER I still have to do the same housecleaning, grocery shopping, laundry, that you do, while being physically, emotionally, and financially exhausted.

If I need to talk about the possibility of my own death, PLEASE DON’T say “Stop talking like that” or “Everyone’s going to die. I could get hit by a bus tomorrow”. The only way you can compare getting hit by a bus and going through treatments for cancer is if when the bus hit you, it dragged you around for five years before you died.

PLEASE DO listen to my fears. Just listen and let me know you’re there for me. I know how important is is to be positive, but sometimes I just need to cry, scream and talk about how unfair life is.

REMEMBER, I am on chemicals that are poisons. My hormones and emotions, my body, my plans for the future, my activity level, my finances and friendships have all been affected by cancer.

PLEASE DON’T tell me cancer is a blessing or a gift. If cancer were a gift, I would have asked for the receipt a long time ago, and returned it! Many gifts and blessings in life come from experience, but please don’t give cancer credit for that.

Cancer is the challenge.
Strength, courage, hope and determination are the blessings.
Your friendship, support and understanding are the gifts.

REMEMBER above all else, cancer has not only affected me. It has affected
you, too. And just as I have asked you to be there for me, I promise to do what I can to be there for you

Made it throught the first YEAR!

It's really hard to believe that this cancer "thing" has been going on for a full year now!

To update me, I was diagnosed a year ago (Aug 1, 2007) with cancer in my liver of unknown origin or Primary. Since then I've had several chemo cocktails, (Gemcitibine, Carboplatin, Taxol, etc.), 14 weeks "off" and since Feb 08 have been on Xeloda - oral chemo, 2000mgs/2x/day. About that same time they re-evaluated my liver biopsy and now their "best guess" is that I have bile-duct cancer.

I have no tumors showing in my bile duct, only in my liver - no nodes. So I am still a bit of a mystery to them.

At first I had a lung cancer specialist, as it was the best guess at the time. Recently I've moved to a GI cancer specialist. The first thing he did was send me to a surgeon for an eval. The surgeon said I am not a surgical candidate too (everyone has said that) because I have too many tumors all throughout my liver. I found out that not only do I have the five they keep measuring with CTs, I also have "many" little ones that they don't measure. Shock and Awe!

He also said that he does not see me as a candidate for radiation because of the number of tumors. He said he'd not want to do radiation unless he had a 95% chance of getting it all, and in my case, that's unlikely.

He DID tell me the same thing as the Dr in Pittsburgh who I sent my records to. He said that IF the Xeloda stops working, that he'd consider chemo embolization. So... Finally I have that all confirmed. That's a quick recap of this past year.

Now for the good news! I just had another CT scan this week and it (again) showed no change. BUT the asst. showed me my scans and pointed out how before the tumors looked solid and firm, while now some look more fuzzy - more mottled in the interior and they suspect that it MIGHT be that some of the cancer cells are dying inside. They aren't shrinking, but they think it's worth a PET/CT scan to see how active they all are. This will be done Sept 4th.

Meanwhile I get a month OFF of chemo! YEA! Since I am going back to Minnesota next week to see my sister (who is in chemo and rad for breast cancer) and my brother and his family. My sis and I are going to a cabin in Wisconsin and hang out - I can't wait! I'm in AZ and here there is no lakes or "swimmin' holes" to jump into, and I miss that a lot! The others are coming too for the weekend. Hopefully it won't rain.

Anyway, back to my cancer. They know it is an adenocarcinoma, but really are not 100% sure what kind. They told me that if the biggest one in my left lobe is still very active, they might consider taking another biopsy on that one this time and see if it tells them anything more. My first prognosis when it was unknown origin was 3-11 months, and I just beat that but if they knew what it really is, they might be able to target treatment better. Is ANYone out there in a similar situation? I feel pretty alone with this thing, I'll tell ya!

I asked my doc's asst. if all this meant that I might actually live for a few more years? And she wouldn't say, but she'd just given me an example of someone they'd had there with a similar liver mets (only in liver no where else) and she went for 2.5 yrs without chemo! I feel really weird about all of this. To go from thinking I was going to fall apart any day to now thinking maybe not! I booked a flight to Chicago for Christmas to see my daughter and it really felt strange to make a plan 6 months ahead! I haven't dared do anything like that all of this year of cancer.

I get that it's best to live in the day, but "regular" people make future plans, and it feels good to do that, but I DID buy cancellation insurance, just in case.

I'm not sick now except for extreme fatigue when I'm taking the Xeloda (2wks on, 1 wk off) but not much pain, no loss of appetite (I should - I'm GAINING weight!) and thank God I'm not experiencing any of the many awful things I could be suffering. They told me this could change any time, so I feel like I'm holding my breath. Hoping I can breathe again soon! :)