• From: Arlington, VA
  • Registered: Wed, 25 Jul 2012
  • Posts: 17

Topic: Husband recently diagnosed with CC

Hello,

My husband was diagnosed last month with CC.  He had surgery two weeks ago to try to remove a 6-inch tumor from his right liver lobe, but the surgeon found rice-grain sized cancer spots on the left lobe, so he closed him up.  The spots did not show on the CT scans.  He also has cancer in his lymph nodes above the pancreas.  He is scheduled to start a trial of temsirolimus, capecitabine, and oxaliplatin in about a week.  He gets his port on Monday.  He had no symptoms other than a vague, intermittent pain on his upper right abdomen that the doctors think was unrelated (he had it off and on for a few years and looking back, we wish his primary care doctor had done an ultrasound, but his labs were normal and he didn't have pain when they pressed on it).  His liver enzymes were high in April, so they had him recheck and when they were still elevated, they did the ultrasound, then CT scan and biopsy.  So this all came as a big surprise to us.  He is 60, and we have a 9 yr. old son who has Type 1 diabetes (he gets 4 shots a day).  Looking forward to chatting with you all since there are not many people to talk to who are familiar with this type of cancer.

  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Husband recently diagnosed with CC

Hi Bluebird,  I am sorry to hear of your husband's diagnosis and that they weren't able to do surgery. I am not sure why they would think the upper right abdomen pain was unrelated because I am sure you will find it is a commom complaint for those with cc. Unfortunately this cancer does not have a lot of signs until it is advanced.
I haven't heard of temsirolimus but have heard of capecitabine; and oxalipatin is one of the more commonly used drugs for cc. We have members on here having good success with chemo concoctions.
I understand the shock of learning a loved one has this disease especially when they seem so healthy. Sending lots of well wishes to you, your husband and son. Nancy

Loving my husband from afar.
  • From: Arlington, VA
  • Registered: Wed, 25 Jul 2012
  • Posts: 17

Re: Husband recently diagnosed with CC

Thank you so much, Nancy.  It's interesting how some people can lead healthy lifestyles and get cancer while others defy all the recommendations yet don't get cancer.  My husband jogged for 40 years, didn't smoke or drink (well, maybe one beer a month if that), ate well, and always got his physicals, colonoscopy, etc.  CC is one of those silent cancers, like ovarian cancer.  Most people don't realize they have it until it is advanced.  I do wish his doctor had taken his pain more seriously and had him go get an ultrasound, though.  I don't know when it started, but maybe they could have done something earlier.  I know there is no point in looking back, but you can't help but do so.  Thank you for your kind wishes, though.

  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: Husband recently diagnosed with CC

Bluebird,
I had pain under my right rib cage and no one took it seriously because all my blood work was normal. I now tell everyone keep searching till you find out what the pain is from. I was diagnosed almost two years ago. Please feel free to call me if you want to talk 330-903-6868.
Lisa Craine

Everyday is a gift

lisacraine's Website

  • From: palmetto bay,florida,usa
  • Registered: Mon, 11 Jun 2012
  • Posts: 25

Re: Husband recently diagnosed with CC

My husband too was diagnosed with cc.  He had no symtoms except a lack of energy during the day.  The doctors thought he was  overworked and needed  a vacation.  As a radiologist he decided to check things out for himself and did a cat scan only to diagnose himself with a 10cm tumor in the right lobe of his liver.  He has had two chemoablations and is now going to start systemic chemotherapy.  This disease  is so random and catches everyone by suprise.  Thank you all for sharing your stories and treatments.  This foundation  has been a G-d send.

6 Reply by PCL1029 (edited by PCL1029 Sat, 28 Jul 2012 12:56:57)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Husband recently diagnosed with CC

Hi, Nancy
Please if you can, start a new topic under general discussion so your message will not be lost inside other people's message.
I am one of the patient like your husband to have the luck to self-discovery of  my intrahepatic tumor through the God's Grace.But I am not a doctor like your husband.
may I ask why he chooses not to have surgery and use chemoembo +ablations  instead. May I ask why  his tumor is not resectable? Is it the mets to other organs or involvement of the major blood vessels?


Cholangiocarcinoma is indeed a rollar coaster ride. I have this ride for 37 months now; your husband will benefit from his peers' medical advices and his own medical background and knowledge,  2nd opinion on interventional radiologist consult if situation is in his favor will be perfect.

Of course,time is not on our side for CCA patient in general,so if possible, try to get a complete picture at John Hopkins (ie: surgerical consultation if not done,interventional radiology consult,medical oncology consult) .The whole work up is a good way to assess the entire situation and the future" of the disease state at JH, the only over allbest hospital in the States.
If your husband wants to be more specific in seeking the BEST;  Dr. Gores in Mayo Clinics is also good at liver surgery and done a lot of research from the molecular level of CC to liver transplant ;if you are a medical professional, I think you will enjoy and learn a lot from him. For medical oncology treatment plans, MD Anderson in Texas  is the best choice when you are really out of options or beyond the success of GEM/CIS , GEMCAP or Taxol/Carboplatin or FOLFOX.
  In general the emotional side of the patient,especially if he is in the medical field,will be tough to understand.As a care giver like you, this is an extra dimension you have to understand and care for him.
Keep in touch and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Arlington, VA
  • Registered: Wed, 25 Jul 2012
  • Posts: 17

Re: Husband recently diagnosed with CC

Thank you all for your messsages.  Lisa, I will probably give you a call soon.  It is helpful to know we are not alone.

8 Reply by PCL1029 (edited by PCL1029 Sat, 28 Jul 2012 12:53:09)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Husband recently diagnosed with CC

Hi, bluebird21.
I am sorry to miss your question until now.
Rice grain size mets in the liver cannot be detected is not uncommon by CT scan.
Normal CT scan slices the body from neck to pelvis into 64 slices from the front (ie: the top of the chest) to the back vertically; newer CT scan machines can slices the same body length in 128 slices and thus can provide an earlier discovery of  development of the tumors.
In general the tumors will not show up on the scans when they are below 0.5cm in sizes unless the slice by chance cuts thru that 0.5 cm  tumor and this may be the reason why the CT scan cannot detect to rice-grain sizes tumor of your husband.

Base on your description,the tumor has spread to other parts of the body,therefore the ONLY logical choice is systemic chemotherapy with or without targeted agents like everolimus , temsirolimus and sirolinus,; they are the mTOR  kinase inhibitors which  inhibit the growth process of the solid tumor and disrupting the protein synthesis of the tumor.   The  mTOR pathway agents are approval mostly for kidney tumor but are also being studied in "primary liver cancer" at this time;  they can be used "off label" by oncologist to treat different types of solid tumors like CCA.
Among the three mTOR inhibitors ,everolimus(Afinitor) is the one that studied the most for liver tumor.
Capecitabine, and oxaliplatin (CAPOX) ,Gemzar/cisplatin,GEMOX, FOLFOX, Taxol/carboplatin  are other chemotherapy agents for cholangiocarcinoma.

Targeted agents for CCA included sorafenib,bevacizumab,cediranib(all are antiangiogenic agents,); erotinib, cetuximab( are EGFR inhibitors); tivantinib(C-Met pathway inhibitor), selumetinib,(a MEK pathway inhibitor) and belinostat (a histonme deacetylase inhibitor) and the combination  use of the targeted agents are being studies in Liver and/or bile ducts tumors. We can expect a lot of these targeted agents will be use in CCA too in the near future and soon.
Hang in there,this is a roller coster ride for sure .
Keep in touch and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

9 Reply by marions (edited by marions Tue, 25 Sep 2012 13:43:05)

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Husband recently diagnosed with CC

bluebird...I don't have much to add to what has already been said, but also wanted to welcome you to our site.

I would hovever like to comment on the aborted surgery.  It happens frequently, as the thickness of the scan plate itself hinders visualization of the seemingly minute portion of the scan and that is why the true extent of the disease can only be determined via open surgery.

Although, no one wants to meet on a cancer board; we are thrilled to have you here.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER