• From: Hayward, ca
  • Registered: Fri, 07 Dec 2012
  • Posts: 5

Topic: Chemo after surgery with crazy CA 19-9

First of all I'm amazed by how many of us affected by this disease, and thank you for providing this mean to pour our anger, sadness, and helpful tips. I have been fighting this disease for my dad who was diagnosed on July 2012. It has been a roller coaster ride, but we have to continue to fight. I just want to say to all of families that are affected by this dreadful cancer to keep hope alive. My father was told that his cancer was inoperable, then we had this wonderful Doctor that sent my father's scan to Mayo Clinic in Rochester, and called us that his cancer was operable. We flew from CA to MN in late august 2012, and we were lucky to have him operated within 5 days. It was a miracle to us, and the recovery was an uphill battle with infection that continued to prolong his stay. There were many days when he felt horrible, but his fighting spirit never died. Dr. Nagorney of Mayo was able to remove all his tumor (negative margin), but his lymph nodes showed metastatic (3 out of 13). Now, he has chemo with gemcitabine but after 2 cycles he develops infection again around the dissected liver. He's hospitalized, and his CA 19-9 is at 3000U from 265U with a CT scan that shows he has two cysts around his troubled liver side. I wonder if anybody knows what's the frequency this cancer coming back after negative margin operation? Does CA 19-9 spike so high is an indicator for the cancer to come back? Thank you all for your inputs, and always keep on fighting!!

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,313

Re: Chemo after surgery with crazy CA 19-9

Dear Super Tom, you are doing a super job taking care of your Dad. Welcome to our remarkable famiy but sorry you had to join. Mayo Rochester is one of the best places you could go to. Unfortunately CC is a little monster with a mind of it's own. We never know what it will do. My husband had a Whipple with clear margins and it returned 3 years later. I can't tell you much on the CA-19 but I know other members will chime in here. I wouldn't be surprised if the Doctor changes up on the Chemo. In fact you might want to ask him if one would work better now over the other. Your father sounds like an amazingly strong man and I hope you can be strong for him! Please keep us updated as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Hayward, ca
  • Registered: Fri, 07 Dec 2012
  • Posts: 5

Re: Chemo after surgery with crazy CA 19-9

Hi Lainy,

Thank you for your welcome. As far as I know this type of tumor doesn't have many drug options. Do you remember what was your husband drug for his chemo? Maybe I can ask my dad's oncologist. I'm trying to be strong, turn my fright into a fight. Now, I'm in the hospital seeing my dad's strength to recover, it's just a blessing day everyday.

4 Reply by marions (edited by marions Sat, 08 Dec 2012 01:40:35)

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Chemo after surgery with crazy CA 19-9

Tom...welcome to our site.  Tom, I am not a doctor therefore, everything mentioned should be considered as that.  I believe that the high Ca  19-9 is related to the infection rather than metastases and I would not be surprised to see the numbers drop significantly with response to treatment.
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
  • Lainy
  • Lainy
  • Moderator
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,313

Re: Chemo after surgery with crazy CA 19-9

Tom, Teddy never had chemo. He had an aborted Whipple then the real deal Whipple 3 weeks later. His CC was contained in his bile duct valve with clear margins and 5 different Docs said no to Chemo. It returned 3 years later where his Duodenum used to be. He then had Cyber Knife which bought him another 2 years and he passed 2 years ago yesterday at 78. I do know though that is is common to change chemos if the ONC feels it is not working.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

6 Reply by PCL1029 (edited by PCL1029 Fri, 07 Dec 2012 22:23:40)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,777

Re: Chemo after surgery with crazy CA 19-9

Hi,
Ca19-9>129 is indicative of cholangiocarcinoma but not absolute.
Recurrence is between 50-75% for cholangiocarcinoma depends on location of the tumor site.
It came back after20 months in my case even with 1.2cm clean margin and 14 month on Gemzar.
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: Hayward, ca
  • Registered: Fri, 07 Dec 2012
  • Posts: 5

Re: Chemo after surgery with crazy CA 19-9

Lainy: I'm really sorry to hear about your husband, he really give a good fight.

Marions: thank you for explanations, will hope the number to go down.

PCL1029: My dad was classified as klatskin's tumor, so he had resected right liver with Roux- en-Y (RNY) procedure. The mayo oncologist told me there are not many options in term of chemo. I'm just hoping his infection is the cause of the spike. The 2nd time around, what are your option of treatments? Have you ever tried other drugs aside from Gemzar?

I'm so thankful for all your wonderful inputs, I will keep you update about his condition

8 Reply by PCL1029 (edited by PCL1029 Fri, 07 Dec 2012 23:20:05)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,777

Re: Chemo after surgery with crazy CA 19-9

Hi,
I am a patient of intrahepatic CCA for 44month ; I am on Xeloda chemotherapy now for about 12 months  and will continue this for a while.
I had my 2nd opinion on medical oncology as well as liver GI specialist consult up at Mayo. in my opinion, Mayo is an excellent place to go for 2nd opinion;but I found they were more on the conservative side of treatment plans.
If I ,myself, want to explore more treatment plans beyond Mayo,2nd opinions by other hospitals like John Hopkins or Mass General Hospital (MGH) will be my choices in overall multidisciplinary approach for the disease; MD Anderson will be for systemic chemotherapy consult. Yes, Chemotherapy and Targeted therapy for cholangiocarcinoma are very limited and efficacy of treatment plans are not absolute.
About available  chemotherapy besides clinical trials,below is the link may be of interest to you.

http://www.cholangiocarcinoma.org/punbb … hp?id=7843

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.