Recently Diagnosed

Dear Kellykanapaux,

I’m very sorry to hear of your wife’s diagnosis.  It is scary and takes a while to feel that you can get a grip on how to proceed. It sounds like you’ve covered the important things ( making sure you see a doctor/center who are knowledgeable about CC).  Getting to surgery is the goal, but please know that just over the past few years we are seeing improvements in treatment options and survival even if surgery is not possible.  My mother was given a prognosis of one year in 2013 and she will be coming on vacation to Ireland with us in July.

For quite a few patients, steroids and getting extra IV fluids helpstremendously with the nausea.  Mom went from not being able to eat and wanting to give up to not even needing the nausea meds during her second cycle.  If not already part of her plan, ask about dexamethasone.

Best wishes,

Catherine

Hi kellykanapaux,

Welcome to our community.  I am so sorry to learn of your wife’s diagnosis.

Please take some time to look through the Cholangiocarcinoma Foundation website – there is a wealth of information for newly diagnosed patients.

One point you mentioned raised my antennae.  You explained you were advised that surgery could be possible if the tumor shrinks via chemo.  It may be this is exactly the case, but you should be aware that when a surgeon says “inoperable,” the judgment is about what he or she feels comfortable doing.  You might consider getting second and even third opinions from very experienced liver surgeons at major cancer hospitals.  In my own case, for example, I was initially deemed inoperable, then a liver transplant surgeon at a major cancer center looked at my records and decided to give it a try.  And my surgery was successful.  My experience was not unique, I have come across other patients with similar stories.  Surgery for cholangiocarcinoma can be very complex and demanding — not all surgeons will take on the more difficult cases.  So you may want to consider getting more than one opinion, looking for highly skilled surgeons.

Nausea is common with chemo, and your oncologist should have many tricks up his sleeve to help.  If one nausea med does not do the job, patients can ask to try another.  It is important that cancer patients maintain the best nutrition they can.

Best wishes that Pooh’s nausea can be resolved.  She is lucky to have your help as she navigates the medical maze.  While cholangiocarcinoma is a tough diagnosis to hear, patients today have many more treatment options than were available even just a decade ago.

Please stay in touch and let us know how Pooh is doing as she proceeds through treatment.

Regards, Mary

• This reply was modified 5 years, 10 months ago by bglass.