Pam-That sounds great-hopefully, someday soon that is how this disease will be approached for everyone. I hate the guessing game of which chemo might work best for someone, and that we still have to rely on therapies that hurt healthy cells. This has been such a frustrating journey in part because there is no one way to attack this disease.  Thank you so much for sharing the information and I'll keep Lauren and you in my prayers.

Love,

Tracey

Just wanted to share this piece of information...There is a clinical trial about to open at Wake Forest that is geared specifically toward cholangiocarcinoma!  The agent is CP1-613, a novel chemotherapy agent that targets just the cancer cells.  Has anyone heard of this drug?  Everything I've read sounds promising; phrases like "strong anti-tumor activity" are being used to describe its effects.

My father is hanging in there; however, he was taken out of the clinical trial he was enrolled in at MUSC because his tumors grew more than 20%.  We need a new plan...choice will be between a trial using ramucirumab with irinotecan and 5-FU (which sounds arduous; side effects of irinotecan sound tough) or the Wake Forest trial.  Sure wish there was some way to know which would really give those tumors a swift kick...!

Thank you, Marion..I couldn't figure out how to do that!

Hi Melinda-my name is Tracey and my dad was diagnosed with extrahepatic CC in Sept. 2011.  He was just "kicked out" of a clinical trial at MUSC (had 20% tumor growth), and we need a new plan.  I was so glad to see your post!  Would you be ok with talking with me on the phone?  Thanks!

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Liz-that is wonderful news!  It sounds like the chemo is certainly doing what it's supposed to do!  Kris-you're in Willow Grove?  You're not too far from me in Harleysville.  Where are you with your treatment and who are you seeing? 

I'm constantly telling people I meet about my dad in the hope that someone else might know someone who knows about this disease...and my dermatologist has a patient whose wife is a 4+ year stage four girl... she just went for a treatment in Florida called electroporation (aka "nanoknife")--I believe this procedure is newer and is for tumors deemed unoperable.  They pass an electric current into the tumor and it damages the cell's surface, causing the cells to die.  You may have heard of this already but I thought I'd pass the info along--another arrow in the quiver...  I have the doctor's name if you want it.

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Before I forget, I was wondering if anyone out there diagnosed with CC was taking a drug called actos for diabetes?  I know I'll never know what specifically is to blame for my dad's cancer, but all along he wondered if that could have been the trigger for this cancer (he saw the commercials for the class action lawsuit linking actos to bladder cancer).  Didn't think much about this... but then I spoke with someone here in Harleysville whose husband was also diagnosed recently--and she told me he was taking actos and cholesterol medicine when he was diagnosed.  Just a coincidence??....I've always wondered about the long-term effect on the liver of all the drugs that are prescribed these days...So, anyone else been taking actos?

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I am posting because I wanted to let everyone know that we found a surgeon who is willing to operate on my dad...A quick history-he was diagnosed last September with main tumor in one bile duct and mets to small colon and omentum.  Surgeon in Lehigh Valley (PA) and Johns-Hopkins both said surgery not an option; Fox-Chase confirmed the opinion.  My dad had 8 rounds of chemo (gemzar+cysplatin) ending March 16th; CAT scan showed only main tumor remained along with one other tumor on the small bowel.  Dr. James Pingpank at UPMC in Pittsburgh was willing to take a look; he performed a laparoscopy last Friday and confirmed that the only visible disease was what the CT showed.  My dad is scheduled for surgery this Tuesday (May 8th)--he will have the one lobe of his liver removed along with the bile duct; gallbladder removed, and the section of bowel that has the one tumor.  The surgeon did say that conventional thinking says that once the disease is metastatic, surgery is out of the question.  But because the tumor on the small bowel is causing my father pain (may be starting to obstruct), and there were no other visible signs of disease, he would operate.  Originally, intraperitoneal chemo was also to be done, but he said that it would be too toxic and that regular chemo would have to follow.

Now, I know there are still a lot of risks and unknowns here.... it's a tough surgery, he'll have to go without chemo for at least 4-6 weeks, and there are probably cells just waiting to regroup.  But--the fact that someone is willing to get the 2 main tumors out--we'll take that!  I don't know why the other tumors responded to chemo and those didn't, but I figure that chemo will work better on remaining cells than on stubborn, larger tumors.

We have hope for the first time since this all started.  I just really wanted to tell everyone that 1) The person who wrote "Ten things we've learned" was absolutely right! Keeping researching until you find someone who says "yes". 2)  Attitude is definitely everything! All along my father said he would beat this so he could get back to work...we all were thinking, "dad, it's time to retire"...but I believe his attitude really helped with his chemo. 3)  See the surgeons out at UPMC!  They were willing to take a look!

My thanks always to all who have taken the time to share their experiences so we all can learn.  My hope is that the journey can be just a little easier for someone else.  My thoughts and prayers are with everyone who is fighting this fight, and I will let you all know how surgery goes.

Thank you all for getting back to me!  I really have tried to be assertive at my dad's appointments; my mom jokes that Dr. Friedman (the oncologist) must dread seeing me sitting there with my notebook!  At the appointment on Tuesday, I'll definitely try to get some straight answers as far as the CT result specifics...I have the feeling it's now or never as far as the possibility of resection goes. 

Pam, I've thought about my anger towards the oncologist--I know I am angry in general because cancer just sucks...but I really feel he tap-dances too much.  I can't tell if it's because he doesn't know some of the answers or if he can't be that straight with my parents.  Either way, I leave feeling very unheard.  If the CT isn't good, and Pittsburgh won't operate, I need a new game plan.  Either Fox-Chase or CTCA maybe.. they are both in the Philly area.  I just hope with all my heart that surgery is now possible.

I'll let you know how Tuesday goes, and thank you again for all your kindness!

Now that I think of it, I'm not sure what Dr. Pingpank meant by that comment (that they are one of only two places that do this kind of surgery).  I took it to mean that they will do resections along with "debulking" of areas where mets are.. but now i don't know!  If it were up to me, I would have gone to Fox-Chase in Philly for the chemo instead of staying in Lehigh Valley (where my parents live)--but my parents are so loyal, so trusting, and wouldn't dream of going to someone else. 

I have struggled from the beginning with the lack of straight forward answers from the oncologist; I understand the need to be positive, but I have gone to all my dad's appointments, notebook in hand, and I always leave frustrated.  My dad had a CT at the end of December ( after 4 rounds of chemo)--the report had no mention of any mets, so I asked if that meant they were gone, shrunk, what?  He couldn't answer the question; he said he would check with the radiologist to see.  He never called us back; at the next appointment, I asked if he had found out about the mets--he never followed up on it.  I thought the absence of mets seen on a CT in September would have been a big deal....Honestly, I get so angry watching this guy busily type his notes and schedule the chemo instead of talking to us that I could just scream. 

Sorry...back to the possibility of surgery.  If Dr. Pingpank (or Dr. Marsh) feel it's worth taking a look (after looking at the new CT)they'll schedule the laparoscopy.  The resection can't be done that way, but they would just continue and do the major surgery if they feel it's doable (they said it would be about a 10-12 hour surgery!)  They would remove the part of his small bowel that had mets attached; the CT in September showed mets to the small bowel and omentum.  When we went to Pittsburgh in Jan, I thought we were going for the resection then; I was shocked when the surgeon said he wanted my dad to have at least 3-4 more rounds of chemo.  He basically said that since the chemo was still having a positive effect, he didn't want to interrupt that treatment before it was totally exhausted. 

So--two hurdles to cross.  First, the surgeon has to look at this new CT and feel it's worth taking a look; second, once he looks inside, decide to attempt the resection/debulking.  I am so worried I can't seem to focus on anything else.  This disease is freaking awful.

Thank you for your help and concern--I so appreciate your input!

Thanks for getting back to me!  The laparoscopy would be just to look around first to see where the mets are--I neglected to say that my dad's CT in Jan. didn't show the mets (they were there in Sept).  I found this surgeon accidentally--I was looking for someone who might do intraperitoneal chemo since his mets were in the abdominal cavity and no where else.  The surgeon called back and actually said he'd consider him for resection.

You're right--I was thinking the same thing--how often has he done this surgery for CC?  But he is a colleague of Dr. Marsh, and I sent his stuff to him also, and he said my dad would be in good hands with Dr. Pingpank....If they take a look via laparoscopy, and he felt the resection/debulking was doable at that point, they would just continue and do the resection.  As far as his main tumor, I have no idea exactly where it is---just that it's intrahepatic, that it's by the ducts of the left lobe (left lobe severely atrophed and right has taken over function).  I also don't know size--the oncologist is very vague when I ask specific questions!!

I haven't posted for a while, but my 72 y/o dad was diagnosed with intrahepatic cc with mets to small intestine and omentum last September.  He's had 8 rounds of chemo (gemzar + cisplatin); and just had a CAT scan this past Friday.  We saw a Dr. James Pingpank at UPMC in Pittsburgh in January who said that he would do a laparoscopy after my dad had at least 3 more rounds of chemo.  So... we've arranged to have the scan sent right out to him and are hoping he'll agree to go in and take a look.

I always read/hear that, once there are metastases, surgery isn't possible.  Yet this surgeon is considering a resection with debulking (taking out the omentum and part of the bowel).  Has anyone had this procedure?  The surgeon said that UPMC is one of only 2 places in the country that do this surgery (of course, I forgot to ask where the second is!), yet I never see anything posted about this.  I did see that someone had a resection done by Dr. Wallis Marsh (also at UPMC) and was doing well. 

My dad has hung in there so well with all this--maintained his weight, keeps busy...he still eats almost everything but seems to have pain when he eats things that are too fatty (makes sense since the main tumor is blocking the bile duct).  No one has ever mentioned radiation, chemoembolization, stenting (he never had jaundice)--this disease seems to present a little differently with everyone, and that makes it even more confusing.

Thank you for any info on this question.  I appreciate all the words of support and kindness given on this site.  Someone said in one of the posts to remember to "live in the moment in the face of anticipatory grief"--that is the absolute best advice but also sometimes the most difficult to follow.  I have to try and live that way because thinking ahead will make me crazy.

You are absolutely right about the stress issue; believe me, that is something I work on everyday.  I know stress can actually trigger illness, and yep--it's very easy to ignore.

When my dad was first diagnosed my anger was off the charts; I couldn't understand how a man who saw his doctors regularly was diagnosed so late (and only because I literally dragged him to the ER and said we're not leaving until we figure out why he's having all this abdominal pain)--I think I called his GI doc the next day to rant about how she managed to let 6 weeks go by without telling my dad about his MRI results (which actually showed the CC in August).  It took me about a week to get it together and focus on what we needed to do to move forward.

The surgeon who did his laparoscopy to confirm the diagnosis actually took pictures of the metastases; all I could think was how can those little blister-looking things be causing all this? What we're hoping for is that the chemo will get rid of enough of the mets so the surgeon can go in and resect the primary tumor and debulk as little as possible.

Thank you for letting me ramble---it's great to have a place where others know exactly what you're talking about!

Thank you for allowing me to vent, and for your understanding my frustration. 

We met with the surgeon in Pittsburgh in January--he basically said that since the chemo is still working (my dad's tolerating it well, he's eating, maintained his weight--only downside is the fatigue), he didn't want to interrupt/stop the treatment.  He recommended at least a few more months of chemo and would re-evaluate around March.  At that point he would do a laparoscopy to determine the extent of disease and then  decide if he can proceed with surgery.  So, for right now it's more chemo. 

He should have another CAT scan soon; I will post again with results.

Hello everyone--

I've been reading and following many discussions on this website, but didn't have the energy/strength to start posting.  I apologize for taking and not giving. 

My father (Edward-age 72) was diagnosed 9/19/11 with stage 4 intrahepatic CC with mets to the small colon and omentum (I have to add after a prior abdominal CT, MRI, endoscopy, colonoscopy and being treated with prilosec for reflux--it's horrifying to think that his abdominal pain/weight loss during the 4 months prior could be so misdiagnosed.  But that's another story).  He has had 6 rounds of chemo (gemzar/cisplatin) over the last 4 months and has tolerated it all remarkably well.  After Christmas, his CT showed no change to the primary tumor (in the bile duct); but the mets were not mentioned at all in the report (Dr. couldn't say whether that meant they were gone, shrunk..I thought that was pretty important to know).

I apologize for my anger and sarcasm... I can't blame the docs for the cancer, but I can blame them for a missing stage 4 cancer that was evident on an earlier MRI; for smiling and acting as if they are willing to answer questions but then hurrying us out the door; for not providing pertinent information like the fact that the University of Pittsburgh has a liver cancer center (we live near Allentown, Pa--would have been nice to know earlier)...I could go on, but I won't.  My parents are the type of people who trust whatever their doctors say without question; I'm the squeaky wheel that keeps asking questions and wanting a second opinion--this has made the journey even tougher. 

My father does not go on the internet and doesn't really know his prognosis; I've actually started to think that has put him in a good place--he believes he can beat this, so who's to say that won't happen?  I guess what I wanted to share the most with everyone is this--Research as much as possible!   Your local docs may not have any experience at all with this rare cancer.  I found out that UP is one of only a few places in the country that will do the kind of surgery my father needs (liver resection with cytoreduction/debulking); no one in the Lehigh Valley told me that.

I want to save my dad's life if I can; at the very least, know that we tried everything possible, and to give him more time with us.  My thanks to all the courageous and thoughtful people who have shared their experiences and knowledge--you've helped more than you can know.