• Registered: Sat, 24 Feb 2007
  • Posts: 37

Topic: Hello and glad to find this forum!

What a blessing!  I did a Google today for CC,  not expecting to find anything new, and somehow found my way to this site...My husband, Tom, was finally diagnosed with CC after surgery to remove the tumor from his liver.  In June he was diag. cancer of unknown primary and told there were no surgical options.  His liver tumor was discovered on a CT scan for something else.  To tell the story with all details would be exhausting for me now, but the short version is that after a try at Xeloda which produced no results, his oncologist referred him to a surgeon with a high reputation and years of experience doing liver surgery & this dr instead of saying "inoperable" said he was willing to give surgery a try if Tom was.  He said due to the location and increasing size of the tumor, it would be a real challenge, and if he got inside and saw cancer spread beyond what he could take out, he would not continue the operation.  So on Jan 10 when Tom went into the operating room, I knew that the longer he was in, the better the news would be.  Four hours went by, then 4 1/2...Finally dr. came out with a smile and said, "I'm tired..."  He said Tom was in for a long recovery, but he thought it was worth it; he got the tumor and also took out Tom's gallbladder which was full of stones.  Fast forward...Tom was in intense pain for the first five of his 10 days in hospital, and was exhausted and confused for the next few weeks after coming home.  He's finally able to drive, for the first time since surgery, yesterday when he took himself to the dr for follow up.

I am interested in your stories and glad that Tom's cancer finally has a name.  "unknown primary" was so scary.   Now that he's feelig better, he's positive the surgery was a good idea.  Even if eventually he gets a recurrence, the pain in his abdomen is gone except for the incision pain.  His undiagnosed gallbladder disease must have been the source of a lot of pain he had last fall. 

From June to Sept last year, his scans showed no tumor growth even without treatment.  He waited to start chemo until we had investigated options.  After emails, paperwork and waiting he got a consultation with a research-affiliated cancer center.   When they did scans, the drs who reviewed them told Tom, "In your body, this disease seems to be moving slowly."  This was echoed again by the surgery follow-up Tom had yesterday.  Dr. said instead of putting him on chemo, if the next scans show that "all is quiet" and "nothing lights up" that Tom should consider not going on chemo but concentrate on regaining weight and rebuilding muscle tone.

What we've learned is that despite ominous prognosis, every person is different, and that you must keep consulting and asking questions. 

Thanks for reading, and I hope to get to know other folks here. 

Sarah

  • Registered: Sat, 18 Nov 2006
  • Posts: 37

Re: Hello and glad to find this forum!

All I can say is to never give up hope.  Half my liver was taken out in March 2001.  At that time the surgeon said my gall bladder was fine but it was in the way, so he took it out, too.  I told him I was glad my heart wasn't in the way.

After a year spots started showing up.  Since then I've been on a number of chemos (mostly clinical trials) and a couple surgical procedures -- the latest which is so far proving successful. 

Because CC is so unpredictable, the oncologist waited for three years before he felt mine was also slow growing and might continue to be that way.  Of course, I'm aware things can change fast, but so far the treatments have been effective for awhile.  Oxaliplatin and Xeloda at an extremely high initial dose under a carefully monitored clinical trail did work for me for over a year and a half.  But I had other chemos which did not work for me but which did work for others.

I just updated the results of my latest treatment in the Experiences Forum.

Good luck, never give up hope, and be aware that new treatments continually become available.   In my case having a good sense of humor also helps, I think.

Jerry D.
Platteville, Wisconsin

  • Registered: Sat, 24 Feb 2007
  • Posts: 37

Re: Hello and glad to find this forum!

Hello Jerry and thank you for the welcome and info.  That's interesting that your dr. said your gallbladder was "in the way" as now I recall the surgeon said something like that also.  I did tell Tom that I had found a new forum and also info about CC.  Tom had a portion of one lobe taken out but now I'm not sure how much that was, maybe 1/3.  He also has hepatitis C which was diagnosed in 1998, but was later pronounced to be chronic and not progressive.  The surgeon said that his liver is relatively healthy except for the cancer.   

Well, thanks again and I'll be around here to read and post and get to know the folks here.  Tom won't ever go to forums for "social" talk but was very active on eBay for several years until a couple of months ago.  He collects and sells watches, clocks, lamps, and other collectable household items. 

Hope the winter is winding down in your part of the country.  We just got more snow here in eastern Washington, but it's supposed to be over by the end of the week.

Sarah

  • Lynne
  • New Member
  • Offline
  • From: Middleboro, MA
  • Registered: Fri, 11 Aug 2006
  • Posts: 12

Re: Hello and glad to find this forum!

Sarah - I'm glad you found this site, as there is so much good information - as you note!  I can't even imagine the feeling of not knowing the cause of the cancer, since having cancer alone is out of control enough.

I have gallbladder cancer, diagnosed through surgery to remove a blocked bile duct last May.  They took out my gallbladder because it was a "mess," but left in the cancerous bile duct (where the cancer had spread from my gallbladder).  After surgery - and I did not have as much pain as your husband afterwards -  I spent a few months recovering, and when I went in for scans in July - Sept - Nov. they were clean and there was no sign of spread.  In January, I had a recurrence where my gallbladder used to be, and began chemo.  I have a scan this coming Monday to see if the chemo has killed those cancer cells and reduced the tumor.

I share this because I didn't realize last summer that a significant minority of GBC patients can have a slow progression of the disease.  While I felt good and had no sign of spread, I was fine not to begin treatment. 

My best to you and your husband as he continues his recovery and you both negotiate the confusion and different-for-everyone path of this disease.

Lynne's Website

  • From: Jackson, Mi. & Florida
  • Registered: Sat, 30 Sep 2006
  • Posts: 50

Re: Hello and glad to find this forum!

Hello everyone -- Yes, this is a very confusing disease and apparently so different for so many people. My husband is still feeling well and looks good -- no symptoms yet. He was diagnosed with CC  in Sept.'06. He has had 5 Cat scans and, just last week, had an MRI. His creatinine (sp?) was a little high, so the radiologist didn't want to administer the contrast dye.(could damage kidneys)
With no contrast in the scan, defining any changes in the size of the tumor made it difficult. The oncologist has decided to do MRI's from now on -- no dye required. My husband has an 8 cm. tumor on the right side of the liver and into the bile duct. It is surprising that he does not have symptoms such as jaundice, etc. The oncologist is not starting any chemo or anything at this time.
It would be wonderful if the "thing" just sits there for quite a while. We continue to pray and keep a positive attitude.
God bless all of you who are battling this disease. We all continue to walk that unknown path.   Seasheller (Jean)

seasheller's Website