thanks, bean, appreciate it.

thanks for the reply, lainy.  the doctor (the g.i. doing his ercp) says the klatskin tumor (he has others, including the main huge intrahepatic one) is kind of eating away at the wall of the duct, i guess, because he said it would show on the fluoroscopy as the contrast escaping out into the abdomen, and would not be good at all.  howard was diagnosed nov. 2008, and we have had at least 2 second opinions that i can recall.  we've also been to virginia to do photo-dynamic therapy with dr. kahaleh.  and he's been on gemcitabine since the very beginning.  i think he may be hitting cancer's equivalent of a patch of ice.  i should know more shortly, i'm just freaking out and overloaded and alone at this moment.  thanks SO MUCH, your quick reply already feels like a friend sitting here with me.

lainy, i *love* the cancer patients' bill of rights.  especially the bus dragging you around for five years.  great metaphor.  i get really tired of people telling me they understand how howard feels, because they too are "sooooo stressed out."  i am printing your post as a reminder.  thank you.

everyone, hello.  i have not been posting, i have been reading at times, but it has been a period of nonstop, i know you know what i mean.  i don't even know what to say, i just need to feel close to people who really, REALLY understand how i feel.  i'm at ochsner medical center in new orleans, waiting for my husband to have yet another unscheduled ERCP, but i think it is getting closer to really dire circumstances.  i guess i'm scared.  we've never really talked.  he doesn't like to think about what will happen, and i don't push it.  i've also been taking care of my mom for five years and she just died xmas eve.  i am so happy she's up there with my dad, but i cannot even stop and think about her because i am scared i'll just breakdown and not be able to take care of howard.  i am just going to do what i have to do, float along, and process later.  it's been working so far.  our doctor just told us he thinks what's happening right now is that the tumor has started breaking down the bile duct itself.  i  know that's bad.  but how bad?  has anyone had this experience and could share with me?  it's such a horrible thing to ask someone to talk about.  this disease really sucks.  thanks all, i really appreciate it.

my husband ercp went fine, except the klatskin tumor is there, inoperable, his onc never even called us.  i just called the office and was given a message to come back in two weeks and they'll check his levels and maybe do chemo then.  he is very uncomfortable and getting yellower.  he's going to freak when he finds out the doc just put him off for two weeks, but i did insist on an appt with him just to regroup.

meanwhile, i am going to broach the subject with my husband about sending his reports and images to other doctors.  i've gotten some good names from this site.  does it sound reasonable for me to do this now?  or any other ideas.

thanks so much
ana

hey me again, my husband has a klatskin tumor that was not on his last mri 2 weeks ago.  he's in mrcp right now, any experience, information, etc.  would be awesome.  thanks everybody.

hi all.  my husband was just taken back for biliary stunt placement.  his new mri shows pretty big changes from 3 weeks ago, including a klatskin tumor.  i'll write again after we get home.  i don't know what else to say, i guess i'm just nervous

darla, patty, ljg -- thanks so much for your input.  ljg, i am sure that howard's doing as well as he is because he does not want to know more facts about the disease,  only the solutions, and he is fighting, fighting, fighting.  he's really amazing me.  i'll tell you, cc has given us one big blessing, and that is it has turned us toward each other, and made us closer and more loving than we have ever been (next month is our 25th anniversary).  i never imagined our relationship like this.  it's awesome, but bittersweet, of course.  i will move on to a different forum for updates, and thanks again.
ana

i can't believe it's been december since i wrote on here.  i've been in some kind of shock i think.  we've been doing chemo, had some decent tumor shrinkage, but yesterday evening my husband went into excruciating pain, itching, burning hot skin, shivering, no fever, and weird stools.  so today they checked him, skipped chemo, and are putting a stent in tomorrow.  so i came to read on stents.  i am just overwhelmed right now.  i appreciate y'all very much.  thanks.

Everyone, first of all, thank you thank you thank you.  i appreciate so much even the fact that there is a place to come where everyone knows what you're talking about!! what a gift.  meanwhile, this is just a thank you because i'm sleepy, but i'm coming back to answer each question, comment, and to ask yet more questions... have a great night, everyone.

ana

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(7 replies, posted in Introductions!)

i love the cookbook idea!

thanks so much for the feedback.  i'm thinking i should ask the doctor about what it would take for him to talk to me privately.  i think he doesn't want to freak the patient out, or lessen hope, but... anyway, i'll check, maybe a medical power of attorney would do it.

i'll start the search and keep reading!

i cannot believe i am learning a whole new language.  "ascites" "whipple" "mets" "celiac."  normal people don't know what this means.  what a crazy club to belong to!

i have hard questions, but i have nowhere else to ask.  my husband's doctor has a rule.  no discussions without patient present, and that's a good rule, except my husband doesn't want to know these answers:

1.  i have seen the sad cases of many who are diagnosed and die in such a brief period.  is this because they were non-resectable, or has it also happened with chemo that fast?

2.  my husband is already having some low back pain and lots of sweating.  also kind of flu symptoms.  does this sound chemo- or cancer-related?

3.  will anyone familiar with intrahepatic, non-resectable cc with distant mets please tell me their experience, timelines, symptoms, etc?  i am really wanting to knowing what means what.

Thanks everyone

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(7 replies, posted in Introductions!)

wow, thanks so much for the good words.  i love the library, tiapatty, and it's right around the corner from work.  i did a quick search there, like one minute, looking at the books, but i am going back more at leisure.

i'm so glad i found this place.  my husband does NOT want to talk about this much at ALL.  he has always been kind of a "denial" person, and for now, i think it's helping him.  i, on the other hand, feel more power by talking it all out.  so i have found my niche!

thanks again.

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(7 replies, posted in Introductions!)

hello all, i've been enjoying reading and learning.  my husband was diagnosed november 7 with intrahepatic cc, unresectable.  lymph nodes involved include cardiac (pericardiac?) and some others i can't remember.  he has finished his first cycle gemzar. 3on/1off.  we sought a second opinion and got the same answers, except for this doctor would have suggested clinical trials first, which our doctor never did.  however, i have searched the trials and so far found only one he qualifies for, once he's been off chemo for 28 days.

i have researched a TON.  this is a crazy cancer!  btw, my husband is 55 years old.  he has been healthy as a bull all his life, never even a hospital stay or a special test!  suddenly he had a gallbladder type pain in october, diagnosed gallstones, then the tests kept going, and here we are.

right now my big problem is cooking.  i am a good cook, but it's hard to satisfy him now with no meat, no fat, no sugar.  i go for pure veg and fruit, very plain and delicious, but he likes more comfort-type foods.  i just don't know how to make comfort foods without butter and such!  is there a suggested diet to avoid taxing the biliary system, i mean an actual menu, maybe even with recipes??

i will be reading here all the time, i'm sure.  i don't know what to expect, of course, although i took care of my dad through his lymphoma and his death (at home), my 16-year old through four strokes (hospital-living not the greatest), and my mother through broken neck, back, and other issues.  i feel i've been in training and now it's time for the marathon!!!

thanks to all, i know this site will be a huge support.
ana