(22 replies, posted in General Discussion)

Her itching and dark urine is probably due to a build up bile in her liver.  I would have her bilirubin checked and if it higher then normal make sure they do something right away.  My doctors waited until I was at 14 norm is (1.4-1.8)  I did not get toxic but my liver would have shut down in days if they waited any longer.


My cancer is now in my lungs and they believe in my stomach.  The only thing preventing me from getting back on some kind of treatment is my spleen ( it is absorbing all of my platlets) .  While consulting at Mayo the suggested that they could take out the spleen with many risks but a chance that my platlets would raise once again.  My doc is also suggesting a Partial embolization of the spleen.  They would partially kill my spleen with radiation to see if that would help my platlets go up.  There is just so many risks to think about and the more they put off doing anything or trying to figure out the best way to go my cancer continues to spread.... 

Has anyone had a similar experience or had the same issue?  If so I would love some advice!!!

Hello and Good day to everyone,

I was diagnosed last July and after five months of chemo: cisplatin and gemzar for the first two and than the following three I was on gemzar and xeloda.  After the five months my cancer did not spread so my doctor decided to take me off the drugs to dry to determine if it was a slow moving cancer or if the chemo was keeping it from spreading.  After going off the chemo my blood counts had went up for a little while but they are now slowing falling again.  My doctor assumes my platlets are being absorbed into my spleen for that is enlarged also.  HAS ANYONE ELSE EXPERIENCED BLOOD COUNTS DROPPING WHEN NOT BEING ON CHEMO! 
After having three ercp's and two liver stents placed  I was told i was going to get into a clincal trial at a larger hospital, after working with the doctors for about a month they told me since my platlets were under 100 they could not administer the trial:(  Im back at square one with my doctor and she has told me all they really have left to offer is to go on xeloda.  Im so very confused on this being my last option!!  So im working on a referral to Mayo in Rochester.  Has anyone had a similar experience or have any suggestions on what I can do next.  My time is running out i have been becoming more nauseated , have been loosing more weight, and at least once a week i end up vomiting.  Im getting so frusterated and Im starting to loose hope in my doctors!!!!  HAS ANYONE HAD SIMILAR EXPERIENCES OR HAVE ANY ADVICE IM NOT READY FOR THIS TO BE MY LAST OPTION!!!

Thankyou everyone

Hi everyone, My name is Tiffany Im twenty five and was diagnosed with cholangiocarcinoma in July of 2008.  My doctors determined it was inoperable and chemo was the best move forward.  I started out on gemzar and cisplatin on a three week cycle.  In Nov of 2008 I was checked and it was not spreading.  My docs then switched me to gemzar and xeloda, Im going into my fourth cycle with the new cocktail and feeling ok.  I have missed every second week dose of gemzar due to my blood counts.