• Registered: Sat, 05 Aug 2006
  • Posts: 6

Topic: cholangiocarcinoma

Hi everyone, my husband has just been diagnosed with c.c. at M.D. Anderson in Houston. He started his 1st chemo treatment of avastin,gemcitabine and oxiplatin.
My husbands name is Chip and he is 47 and otherwise in perfect health. We have gotten many opinions and most are not very good. The doctors say he is not a candidate for surgery or a liver transplant. I was just reading about Dr. Jenkins in boston, sounds like he knows more about c.c. my husbands from Boston so we thought we would give him a call. I have learned alot from the website, I like to read about other familys like us that are fighting this rare cancer. I just dont know what to believe when they say you have any where from 3 months to a year to live. It sounds like all of you out ther are doing a great job at fighting this beast. Has anyone tried the same chemo as my husband?

Susan

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: cholangiocarcinoma

Hi Susan,

My brother Mark was on the exact same regimen for several months and so was Val McCrea they both had good results.  I'm very pleased to see that MD Anderson put you on Avastin, as you have just been diagnosed.  Who is your oncologist there?

One of the most difficult things with this particular regimen is its "lasting effects" the longer you are on it your husband will experience numbness and tingling in his hands and feet, unfortunately sometimes the neuropathy doesn't go away.  Alex sent me some information that his oncologist used to try and avoid this effect and I will send that to you.  This is something you will have to discuss with your oncologist and perhaps push - but I know that both Mark and Val have had some lasting and uncomfortable side effects from the oxaliplatin (they say that after you go off the oxaliplatin the side effects increase for about 2 months and then slowly over the next 6 months the effects go away.  I think Alex was able to avoid this with the use of Celebrex.

Anyway, I'm going to find the information that he sent me and I will send it to you.

Good luck to you and your husband.  Keep us updated.

Stacie

3 Reply by marions (edited by marions Wed, 09 Aug 2006 22:21:07)

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: cholangiocarcinoma

Hi Susan
we had a similar experience in re: to life expectancy and so have others on this site.  First we cried - then we fought.  I believe that Dr. Jenkins should be one of the surgeons you should contact since he has performed 200 operations of this type. 
As far as I know he does give second opinions however, many surgeons  simply don't have the time for this. Approaching medical institutions as "new patient" gave us better results in re: to a consultation with a specialist.  We had gathered five surgical opinions - only two agreed on total resection -

Hopefully this will help.

MarionS

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