Cholangiocarcinoma Wiki
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*Try to start treatment with "Emend" added to your chemo.  Emend is an anti-nausea drug.  After the first treatment of Gem/Cis, Andrea reported fairly significant nausea.  The doctor added Emend to her chemo, and it made a huge difference.  Other patients have also reported a big difference with and without emend.  Our question was -- Why not start with this included??
 
*Try to start treatment with "Emend" added to your chemo.  Emend is an anti-nausea drug.  After the first treatment of Gem/Cis, Andrea reported fairly significant nausea.  The doctor added Emend to her chemo, and it made a huge difference.  Other patients have also reported a big difference with and without emend.  Our question was -- Why not start with this included??
 
*The typical routine for Andrea was to have chemo on Wed (day 1), and then actually feel pretty good during day 1 and day 2.  The steroids that are a part of the chemo regime seem to help make these days pretty ok.  Friday (day 3) is the day that things start going down hill.  For the first few treatments, Andrea had a low grade fever on Friday.  In addition, she would start to get neck pains which are similar to what the flu feels like.  Saturday (day 4) was typically the worst day with Andrea wanting to mostly rest that day.  Sunday is much improved over Saturday.  Things then steadily improve until the next chemo day.
 
*The typical routine for Andrea was to have chemo on Wed (day 1), and then actually feel pretty good during day 1 and day 2.  The steroids that are a part of the chemo regime seem to help make these days pretty ok.  Friday (day 3) is the day that things start going down hill.  For the first few treatments, Andrea had a low grade fever on Friday.  In addition, she would start to get neck pains which are similar to what the flu feels like.  Saturday (day 4) was typically the worst day with Andrea wanting to mostly rest that day.  Sunday is much improved over Saturday.  Things then steadily improve until the next chemo day.
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*After the first 4 or 5 cycles, Andrea's white blood cell count started to dip too low.  We had to add neupogen shots (3 and then 4 per treatment) to help keep her blood counts high enough for chemo.
*After the first
 
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*Roughly every 3 weeks (on day 1 of each cycle), Andrea would have her CA 19-9 checked.  We were very concerned that the CA 19-9 initially increased.  An oncologist told us not to be too concerned with the initial change in CA 19-9 because sometimes the initial stress of chemo on the cancer cells actually causes an increase in CA 19-9.  This was the case for Andrea.  The CA 19-9 reading did not decline until three months after chemo began.  Here is a graph of the CA 19-9 experience:  [[File:Ca19-9.jpg|left]]
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Revision as of 19:06, 31 December 2013

Summary and Research

Assuming surgery is not possible initially, the most common First-line therapy  is a combination chemotherapy regime made up of two chemo agents: Gemcitabine + Cisplatin (Gem/Cis). This emerging standard of care is based on the results of the ABC02 clinical trial that demostrated the survival advantage of GemCis compared to gemcitabine alone.

Patient Experiences and Suggestions

Experience from jscott

So far, my wife has tolerated 12 cycles of Gem/Cis very well.  Each cycle has consisted of 21 days, with therapy on day 1 and day 8.  Details of our overall experience can be found here.  For the gem/cis therapy, there are a few things I would highlight for new patients:
  • Andrea got a chemo port prior to starting Gem/Cis.  This was hugely helpful.  We saw a number of patients getting chemo with an IV, and that looked very painful.  A port a least lowers the stress of "chemo day,"  Even though getting the port was a surgical procedure and somewhat painful, Andrea is a big believer that getting it was a very good decision.
  • Try to start treatment with "Emend" added to your chemo.  Emend is an anti-nausea drug.  After the first treatment of Gem/Cis, Andrea reported fairly significant nausea.  The doctor added Emend to her chemo, and it made a huge difference.  Other patients have also reported a big difference with and without emend.  Our question was -- Why not start with this included??
  • The typical routine for Andrea was to have chemo on Wed (day 1), and then actually feel pretty good during day 1 and day 2.  The steroids that are a part of the chemo regime seem to help make these days pretty ok.  Friday (day 3) is the day that things start going down hill.  For the first few treatments, Andrea had a low grade fever on Friday.  In addition, she would start to get neck pains which are similar to what the flu feels like.  Saturday (day 4) was typically the worst day with Andrea wanting to mostly rest that day.  Sunday is much improved over Saturday.  Things then steadily improve until the next chemo day.
  • After the first 4 or 5 cycles, Andrea's white blood cell count started to dip too low.  We had to add neupogen shots (3 and then 4 per treatment) to help keep her blood counts high enough for chemo.
  • Roughly every 3 weeks (on day 1 of each cycle), Andrea would have her CA 19-9 checked.  We were very concerned that the CA 19-9 initially increased.  An oncologist told us not to be too concerned with the initial change in CA 19-9 because sometimes the initial stress of chemo on the cancer cells actually causes an increase in CA 19-9.  This was the case for Andrea.  The CA 19-9 reading did not decline until three months after chemo began.  Here is a graph of the CA 19-9 experience:  
    Ca19-9