UPDATE: 
It's been 3 months since my dad's last scan and the one he had in October has again come back clean.  No changes from July - we are all breathing a sigh of relief!!

He's still doing very well, feeling great and planning to do some traveling over Thanksgiving and maybe again in March.  We're so happy and will hope for the best when he has his next scan sometime in January.

My thoughts and prayers to all of you,
zuzuby

Thanks, Joyce.  I just posted under the "Good news/what's working" section as you suggested!

zuzuby

I have some good news to report that my dad's CT scan in July came back clear - no tumors were seen in his liver (or anywhere else) since his surgery in April!  He will have a follow-up scan in 3 months, along with blood work for tumor markers (which have so far always been in the normal range).

My dad is really doing great right now, too.  It took him a while to recover from the whipple, but he's starting to gain back some weight, has gone back to his part-time job and is even planning a trip to visit us at the end of the month.


A brief history:  they found a tumor in the distal bile duct in March and he had the whipple at the Mayo in Jackonsville in April.  The lymph nodes were clean, but they did see 4 spots in the liver, which were small and mostly removed for the biopsies.  2 samples came back as malignant and the tumor in the bile duct had attached to the portal vein, so he was designated as Stage IV. 

Not very good news, so we were trying to decide on whether to go ahead with standard chemo or enter a clinical trial.  After much research and speaking to his doctor, we decided he should have a follow-up CT scan so we would know exactly what we were dealing with, since we had no idea if any new tumors had appeared since his surgery.  He had the CT scan in July, which was 3 months after the surgery.  And the scan came back clean, so for now we are not going to do anything except enjoy life and hope for the best when he has the next scan in October.

I'll continue to follow this board and hope and pray that others will have equally good news to share.

I will update when he has his next scan in October.

zuzuby

My dad had his CT scan on July 17th and I'm happy to report that it came back clear with no visible tumors.  The exact words of his doctor "Overall, these findings are very favorable and showed no current evidence of cancer."  He recommends repeating the CT scan, along with bloodwork, in 3 months.  This is the best news we could have received.  My dad is feeling great and we are all praying that he will stay this way for a while.

Thanks to all of you for sharing your experiences and for your advice and support.  This list is a wonderful thing for anyone searching for information and support on CC and I'm so glad I found it.

I will update again when my dad has his next scan.  In the meantime, I will keep all of you in my thoughts and prayers.

zuzuby

Isaac,
Thanks for relaying your experience.  It sounds like xeloda is working well  for you.  Did your doctor ever mention Gemzar? (gemcitabine is the generic name).  That's what the doctors at Mayo are recommending if/when my dad does decide to do chemo.

So far my dad's tumor markers have always been in the normal range, so at this point, that's not a parameter that can be used for monitoring his progress.

We're still waiting for the hospital to call with an appointment for my dad's CAT scan.  I'll update once we have the results.

Thanks,
zuzuby

Sara,
My dad is being treated at Mayo in Jacksonville (FL).  The doctor I was referring to who is so wonderful is his gastroenterologist, Dr. Wallace.  He's been with us since the beginning, when his local doctor referred him back in March for a blocked bile duct.  He's always been there for us and has been very supportive.  We only met the oncologist once, his name is Dr. Kim.  He was ok, but he wasn't completely familiar with my dad's case (not that I expect him to know all the details).  He was a bit formal at the beginning, but after spending an hour with us, by the end he was more relaxed and open to discussion.  He said we could call anytime with questions. 

I decided to call Dr. Wallace first, since he's more familiar with my dad and his case and he has been coordinating everything for him.   I've also met him several times, since I've flown in from Boston when my dad had his surgery and consults.  The CAT scan will be done locally (my parents leave about 3 hrs. from Mayo) and the report will be sent to Dr. Wallace.

Thanks also for the info on Avastin.  I guess it was the list of potentially serious/life threatening side effects that scared me (bowel perforations, internal bleeding, breathing problems).

zuzuby

Hi Joyce,
Thanks so much for your reply.  I'm sorry to hear that things didn't work out for your mother, but appreciate your honesty about her experience with the chemo.  I don't expect it to be an easy road ahead, but want to be as informed as possible, given the circumstances.

I spoke to my dad's doctor yesterday and he agrees that getting a CAT scan is the way to go.  He said that my dad's MRI taken on March 30 (his surgery was on April 20) showed no visible tumors, so this will be the baseline.  It's been about 3 months now, so it should give us an idea of what's going on in his liver.  He also told me that the surgeon did not remove all the spots he saw on my dad's liver (the report said "numerous spots on the liver"), but they were small.  I guess he only biopsied 4 of them and 2 (both in the same segment of his liver) came back as malignant. 

My dad had a tough time recovering from the surgery and from this experience I've learned he has a pretty low tolerance for pain.  And right now he's feeling so good, I know he's nervous about chemo and feeling bad again.  So, I'm praying that nothing significant will show up on the scan.

This doctor has been so wonderful, he spent almost 30 minutes on the telephone with me discussing my dad's case.  He also felt that chemo was not necessarily the best course of action right now, and waiting was definitely a reasonable option.  Of course, he also said there are no right or wrong decisions and that it's up to my dad to decide what he wants to do.

My mom will call on Monday to schedule the scan.  I will update once we get the results.

Thanks again to everyone for their replies and support,

zuzuby

Marions and JeffG,
Thanks for your input. I will check out those other subject areas you mentioned and see what others have found helpful.

After much searching on the internet, many telephone calls and talking with my mom, we've decided to call his doctor and ask about my dad getting a CAT scan so we can see if there are any tumors in his liver right now or not.  It's been almost 10 weeks since his surgery, when everything they could see was supposedly removed.  I realize that there are probably cancer cells in his liver, but if things are still so small they can't be seen, maybe it's not worth him starting any type of chemo at this point. 

When I spoke to the clinical trial coordinator at the Mayo in Rochester, she said in order to be in the trial he has to have "measurable disease".  So I could be doing all this research on the trial and he may not even be a candidate for it.  That's why we've decided to see about getting him a CAT scan.

Any other comments on the chemo drugs will still be appreciated.  I want to learn as much as possible so if/when the time comes to decide, I'll have some info to base it on.

I'm so glad I found this site, it's great to have access to a resource like this.

Thanks,
zuzuby

This post is copied (with some modifications) from my first post yesterday under Introductions, but since I haven't received any comments, I thought maybe it was more appropriate under this category.  Sorry if I'm breaking protocol by posting the same info twice, I'm new to these message boards and I'm really trying to find out as much as possible to help my dad decide what to do.


My dad, who's 75, was diagnosed with an extrahepatic bile duct tumor in March and had the Whipple procedure at the Mayo in Jacksonville in April.  During surgery they found some spots (largest was 1 cm) in his liver which on initial biopsy were reported as benign, but the final pathology report said that 2 of them were indeed cancer that had metastasized from the bile duct.  The primary tumor was about 1.5 cm and had attached to the portal vein.  The surgeon was able to resect from the portal vein and also removed the 4 spots he saw on the liver.  Due to the involvement of the portal vein and the metastases in the liver, his cancer was categorized as Stage IV.  His lymph nodes and his pancreas were clean, so it's just the liver at this point.

The oncologist at Mayo is recommending chemo.  He has offered my dad to participate in a clinical trial of Avastin and Tarceva or he could go a standard protocol of chemo with Gemzar.  I am a bit worried by the potentially serious side effects of the Avastin and was wondering if anyone has had any experience with this trial or either of these drugs. 

My dad feels so good right now and it's unclear to me as to whether this treatment will prolong his life significantly and if it's worth the potential serious risks and side effects.  We're also having trouble deciding what to do next because we don't really know if he has any visible tumors in the liver right now, since the surgeon said he removed the spots he did see during the surgery.

If anyone has experience with these drugs and their sides effects I would really love to hear from you.  Also any thoughts in general on whether to go with the chemo at all at this point would be much appreciated.

Thanks so much,
zuzuby

My dad, who's 75, was diagnosed with a bile duct tumor in March and had the Whipple procedure at the Mayo in Jacksonville in April.  During surgery they found some spots (largest was 1 cm) in his liver which on initial biopsy were reported as benign, but the final pathology report said that 2 of them were indeed cancer that had metastasized from the bile duct.  The primary tumor was about 1.5cm and had attached to the portal vein.  The surgeon was able to resect from the portal vein and also removed the 4 spots he saw on the liver.  Due to the involvement of the portal vein and the metastases in the liver, his cancer was categorized as Stage IV.  His lymph nodes and his pancreas were clean, so it's just the liver at this point.

The oncologist at Mayo is recommending chemo.  He has offered my dad to participate in a clinical trial of avastin and tarceva or he could go a standard protocol of chemo with Gemzar.  I am a bit worried by the potentially serious side effects of the Avastin and was wondering if anyone has had any experience with this trial or either of these drugs. 

My dad feels so good right now and it's unclear to me as to whether this treatment will prolong his life significantly and if it's worth the potential serious risks and side effects.  We're also having trouble deciding what to do next because we don't really know if he has any visible tumors in the liver right now, since the surgeon said he removed the spots he did see during the surgery.  I realize that there probably is some cancer in his liver, but it's difficult deciding just how aggressive we should be.

My parents are really counting on me to help them decide.  I have some background in science (I work in a research lab and have some friends that are doctors I can consult), so I can at least understand what the doctors are saying and what the drug descriptions mean. 

My parents live in Florida and I live near Boston, which makes it difficult for me being so far away.  I was able to fly down during the initial consult at the Mayo and was there for 3 weeks after his surgery.  I just go back from my 3rd trip last week when we met with the oncologist.  I'm plan to call him back with some questions once I look into what's out there and look up these drugs.

If anyone has experience with these drugs and their sides effects I would really love to hear from you.  Also any thoughts in general on whether to go with the chemo at all at this point would be much appreciated.

Thanks so much,
zuzuby