(continued response to Matt....)

Going to Seattle on vacation from (hot) Dallas.  Call cell 214*734*5023.  My husband can speak on medical level too if you want to talk to him.

Aug 11, 2013
I am now 65 and in "excellent" health (besides ICC).  I hope this info gives you and perhaps others some bit of hope. 

Diagnosed 11/09.  (Caught it before it spread beyond the liver.) 
60% of liver resected, clean margins.  (Dr. Rohan Jeyarajeh, Dallas, TX)
Gem/Cis preventatively.                       (Dr. Vikas Aurora, Grapevine, TX)
8 months remission. 
Reoccurrence to a local lymph node. 
Gem/Cis again                                      (Dr. Vikas Aurora, Grapevine, TX)
Removed the rest by surgery.              (Dr. Jeffrey E. Lee, MD Anderson)
1.5 years remission. 
Reoccurrence to a slightly more distant lymph node. 
Taking (oral) Xeloda now.                     (Dr. Vikas Aurora, Grapevine, TX)
CT next week (mid Aug 2013) after 3 cycles.

Side effects never a big deal to me but I did get/use a dietician specializing in cancer care to give me more tips on preventing side effects)  Recommend.

Cancer hormones can cause depression not to mention the fear of the diagnosis.  So make sure either of you don't become trapped in anxiety, depression, or fear of making a decision.  If so, seek help (e.g. meds, stress mgmt education, mind/balance steps, no secrets.  I even have an upbeat personal trainer come to the home to keep my core strong, energized, good circulation, big smiles)

I'm impressed with your medical saavy and research.  Your wife is lucky to have you in her corner.  My husband (former pharmacist then lawyer) was/is great at that too.  If you ever need/want to talk to someone who can talk to you on that level, feel free to call 214*734*5023.  I haven't posted much here so I don't know if I'll know if you reply on here.  Going to Seattle vacation this week... That's my cell.

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(3 replies, posted in Introductions!)

My oncologist doesn't know of anyone like me so we're walking an unknown path.  If there is anyone in my situation, let's compare notes, please!

I have interhepatic CC.  I'm 63 and very healthy.  The large liver tumor was successfully resected; no sign left.  Did Gemzar/Cis just in case.  No sign.  Then, 8 months later, one lymph node near there doubled in size and was malignant.  Tried Gemzar/Cis again.  It remained stable with only a little shrinkage.  PET doesn't show activity but node is still enlarged and the "SUV"  background was a bit brighter than they would have liked and could have concealed seeing activity.  (So, what to do?)

Went to MD Anderson (Houston, TX) for an opinion.  An endoscopic sonogram shows also something dark between lymph node touching/encroaching on pancreas, portal vein, and CBT.  It didn't light up in PET at all but its darkness on sonogram suggests something is there (scar tissue from operation, dead or almost dead cancer, infection -- don't know).

Almost all doctors suspect it isn't dead in the lymph node periffery but they didn't take another biopsey (as intended) to prove it.  The MD Anderson surgeon can't meet with me for two weeks to say what he'd do.  The IMRT doctor won't comment til the surgeon does.  My home oncologist was considering 5FU to see if it keeps it stable.  My home surgeon thinks surgery  is a bit risky (and he is a risk taker!) and was hoping for radiation.   But the radiation doctor had said before the endo that  IMRT is the only radiation possibility and he would strengthen the dose which has a 25% chance of hurting the duodenum.

Anyone else out there like that now or in the past?  I can't be the only one who got rid of the liver tumor but am living in a world of don't knows.....  I rather fear surgery if it involves the pancrease (perhaps whipple procedure) which has an abundance of potential complications and doesn't spell CURE according to posts I've seen.

Sorry, but I could almost throw up over being in this current world of "I don't know for sure."  I've always been symptomless from the cancer to date but whenI read all tehse posts, I fear I'm just living on borrowed time for now.

Dear Fatima,

I have been treated twice with Gemzar/Cisplatin (which kept it stable).  I had no problem with either drug either time (other than needing a Nupagen shot the day before chemo to raise my white blood cells back up each time).  Some people have trouble with that shot too.  I did not.

However, my late husband who has another type of cancer was treated with Gemzar at Sloan Kettering in New York City in 2001.  It caused him a great deal of pain.  The doctor couldn't figure out why.  As the tumor was pushing the skin out, we noticed a remarkable shrinkage of same the next day; however, he did not wish to return to that therapy.

I know that if they put contrast dye in your veins rapidly during a CT scan, it will cause a sharp pain a few inches up the arm initially.

Wish I could help more.  I am pursuing a second opinion for the next treatment type at MD Anderson in Houston.  It was successfully resected from my liver, but eventually metasticized to a lymph node and possibly to the pancreas...  Can't tell if it is active or dead (neucrotic) yet.

I can relate to both sides.  My late husband died in 2002 of mesothelioma, a fatal cancer almost always caused from his exposure in his teens to asbestos on a summer job.  He lived only 5 months from diagnosis.  I am a strong advocate, but inside I was terrified, angry at the cause, I didn't get any sleep, and we had the potential to lose everything.  Aspects of his illness nearly killed me.  I got help with antidepressants/anxiety meds.

So, five years later, I meet a wonderful man and marry him.  Two months later, I get a diagnosis that included the words "most people die from 3 months to 12 months" with no known cure.  Well, certainly back to the antidepressants.  I also chose to spare myself and my family by asking them to help me conduct life as normal:  Lots of love, laughter, get togethers.  No sad faces to see each and every day.  We can talk about tests and stuff.  I just don't want it to be worse than it has to.  And I jumped through hoops to get my Will wrapped up so things could change hands immediately.

I feel your pain.  Everyone's different and every situation.  Certainly one with young children to raise is a big difference and another is economic security.   Sad but true, I do hope that she has her will updated and if not, please drum up the courage to ask her to do so for the just in case so the kids will be covered and there won't be additional grief from any hang ups in paying for the mortgage, etc.  This is not a time to worry that she will think she's definately going to die.  But she knows that she has that risk and she might be shy to bring it up in case that makes you emotional.

I like the idea of writing notes or recording messages.  If she is able to record or express to you or write, perhaps she could leave notes or letters for them to be read or heard on certain birthdays and events like graduation, marriage, being a spouse, certain big birthdays -- and for you too.  It doesn't have to be prophetic, sometimes the best is showing her recognizable sense of humor.  Also, don't be afraid to flirt or show her your sense of humor.  They miss that.  At times when I thought my late husband was just "out of it," some nurse would come by, touch his shoulder, smile, look happy to see him, and kid him.  He lit up like a lightbulb and started talking.

Oh yes, get enough sleep.  When caregivers are exhausted, it is too much of a load to bear.  Ask for help so you can get teh rest.  Even if she doesn't want you out of her sight, this you must do, one way or another.  I don't think I could give any more important advice than this.  I didn't and it was like having post traumatic syndrome.  Don't let that happen.

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(11 replies, posted in Introductions!)

Dear PLJC:

Mmmm, I think I have some good news for you.  Even though you have been treated poorly, the fact that your tumor was resectable was the rare best opportunity that most people don't get.  Secondly, it looked like they got it all.  The chemo combination you were given is one of the best studied for any kind of help with this cancer.  I know, I read the large study that just was released last Spring.  Most studies are only a handful of people.  this one was about 400 people.  As I understand it, the gemzar is in large amount, the cisplatin small.  They both help each other be more effective while at the same time, lesson the bad side effects of each other.  I know because I had an amazing surgeon, caring oncologist, and am looking as if I've been cancer free since the surgery, taking the chemo as a preventative (adjuvant therapy).  I did amazingly well with the chemo.  MD Anderson also agreed with my oncologist on the best treatment.  The radiolotist said it was too dangerous for me.  I had a tumor that was about 55% of my liver (they earlier thought it was 60% or more and had to think twice about giving me the surgery).

Now, you just need to insist on a caring oncologist hopefully taught in a good school and internship.  (Mine had internships and were doctors in  Chicago's finest hospitals.)  If they aren't caring, then for me, they are depressing and frightening.  I experienced that before with my late husband's doctors. 

Best of luck to you.  I don't think I've visited this board since late last year when I found out what I had.  I'm doing great, holding my breath, and I hope you are too.  Just kick those uncaring doctors to the curb.

This is just what I was looking for.  What to do if I see any sign of cancer after I finish my treatment with Gemzar and Cisplatin soon.  Last CT was still clear.  Next one is in early August.  I'll ask about Tarceva.  God bless and glad I came across this site.  BTW, my surgeon is awesome if anyone needs a reference to one.  His nickname is "Dr. Angel Hands."  Are you still diong well, Houston Mom?  What were the side effects of Tarceva?