Marion, thank you for the help, it has been a daunting task looking searchin through the trial information, so the link you gave me is helpful.  She had a 2nd opinion with Mayo in Jax and honestly we really liked them...spent a lot of time with her covered all option (at the time), so we are going for a consult with them as well.  We have also already followed with the cancer center at Emory in Atlanta, just a slow process, everything is 2 weeks, 2 weeks!  We will have to have all our t's crossed when we go in next time with all our questions....I'll let you and the community know how it goes. Getting bounced from the first trial is depressing because it is seemingly working on existing tumors (they were shrinking) but with another one popping up they took her out.....we support as much as we can, but of course she was really hoping the first one was the ticket!

Thank you again, Sidig

Marion, thank you for the clarification, you help is soo apprecatiate.  It looks like they verified two of the tumors shrunk but the 3rd had increased a little and with the new blood test the increase in CA-19-9 is apparently to much....they are taking her out of the study and recommending the start of Chemo, mom is verifying what drugs but i think the standards I have seen hear are what they are moving forward with.

I have a question though....her doctors are saying SHE is "free" to find another study to try and how far she is willing to travel or come back in two weeks to start the Chemo.  They said they do not have the time or resources to assist in finding anything else other than the Chemo....is this normal....no more use to the study so on to the standard route....is this typical?

I have a question for anyone in this trial....my mom has been in this for about 8 months and happy to say she is holding her own, not much in the way of side effects although there have been some, (I would consider minor in regard to what chemo would bring).  Her growth(s) have not been increasing and have possibly gotten a little smaller.  Waiting on next scan as one did show some increase however with others "possibly" smaller they think it the scan may have been off a little bit and did not measure the exact "slice".  Her Ca 9-19 number have been up or down....back in Dec.2010 when diagnosed it was around 48.  Up and down since and up to 150 now. Most times up or down only 5 or 6 points.  She is a little discouraged right now...probably more time to think about things after the 6 or 7 trips she has taken the last 9 mos however she asked me to write.  I think this is minimal movement however the 100 point up since starting is freaking her out a little...is anyone experiencing Ca9-19 up and should this be any type of alarm.

Thank you in advance

Nicoles,

My mom did not start experiencing any side effects until after 2-3 weeks however what she has had has been "mild" compared to what they could have been with Chemo.  I am sure there will be up and down reports as we go however thus far she is still positive.  It took a while for her to get there however she is living her life and not dwelling on the future so much now that she is in the trial.....and had positive signs to this point. I pray your mom is being as positive.....it was rough in the beginning as she struggled to come to grips with so many unknowns with this disease.  Please keep us updated on her progress, I will do the same.

God Bless you and your mom!

Thomas

My mother is in this trial as well.  After first 2 months, today she was told the same thing as thirdone's dad at the beginning of this thread....it has shrunk a tad (3% they say)....she said dr's said +/- 1 inch is no change, but this does not sound right...I would assume 1cm.  Either way, no growth and has shrunk a little after first 2 months.  We will take that everyday!

Prayers go out to everyone still fighting for themselves or a loved one!  Proudly wearing my cholangiocarcinoma.com bracelet!

Great news! After the first  2 months of treatment on this trial we learned today there has been a 3% reduction. Mom is a "reserved" happy, she wanted it gone. Obviously that was not an option after 2 mos, but she is doing well and still only minor reactions (mainly just a rash on her hands). She is lucky enough to be continuing the trial for another 2 mos.  Slow but sure is the course. Any reduction or no growth is a blessing!

Thirdone, Great to hear your dad has started up again, "hopefully" the Ibuprofen was the culprit!  My mom's spirits are up this week after starting the medication on Monday AND what I think is good news (and more importantly what she sees as good news) is...last week they had her re-take all the tests she had to diagnose the CC (PET Scan, bloodwork, etc. ) to establish the baseline for the Trial and she was told they did not see any percievable growth in the existing tumors!!  Her attitude for now has really changed for the positive, so we are happy for this and starting treatment. Still good but told she probably would not start experiencing much in the way of side effects until the 2nd round of treatment. 

How long has you dad been in the study? How long until he started experiencing any side effects?  Do you know if they would allow him to take Vitamin D3 or would this be off limits while in the study.  Mom is going all out to eat healthier (although I am encouraging her to eat MORE). I cant' say I agree with the limited food intake she is following but whatever make her feel better is good for me. She has many friends who care a great deal, sharing pos. experiences of other survivors and encouraging her to do supplements, teas, etc. and this worries me because I want her to trust the doctors until a time we need to try other alternatives.  Any suggestions on how to work with her on this type of intervention?

Thirdone, thank you for that very good to know.  My mom starts the trial today in Orlando, fingers crossed and prayers for a positive outcome. Trying to keep her hopes up but difficult.

Thank you to ALL who have responded.  All of your wonderful feedback, stories and suggestions are very appreciated. We have not learned anything new however are armed with even more questions to ask at the 2nd opinion appt. tomorrow and things to ask our original Onc. I will surely post what we learn tomorrow.  We are very hopeful and prayerfully look forward to beginning treatment whatever it may be.

Blessings to all of you!

Sidig

Hi All,  I found your wonderful site to learn as much as I could to help my mom!  She has been diagnosed in the last 3-4 weeks and as I read from many of you our confusion over this disease is shared by all of you. Her story, quickly.  She went to see doctor after having some pain in her side and they found a tumor between her liver and pancreas (not attached or a part of either organ).  She had no other symptoms, nothing shows in blood tests, all markers are within range but there is a the tumor, I believe a lymph no shows some signs and of course the cancerous cells in the bile ducts where they believe this all started. No blockage at all in bile ducts at this point. She is being treated at MD Anderson (Orlando) and now has a port.  Supposed to start Chemo (not sure of cocktail), but is now being told she "may" qualify" for a trial.  We were told the chemo was to kill off anywhere else cancer may have spread.  Surgeon said he doesn't prefer operating unless it would cure and the location is "risky" to remove. I have been reading the forums and feel better prepared for next Dr. visit (2nd opinion with Mayo (Jax) next week, so already reaping benefits of all who are fighting this.

Some questions for you.....
1.  I see very few mentions of using radiation in posts, is this not used often with cc?
2.  Not that there is a "typical" but is it normal to attack the system with Chemo first and is there specific cocktails to attack the disease in bile ducts?
3.  If she qualifies for the trial Dr. says it is her choice to move forward with it or start with the Chemo. We are just starting the fight and we do not know what questions to ask regarding cost/benefit of clinical trials. Can you suggest things we should ask to help the decision.
4.  What makes someone "inoperable", location?  Spread of the disease?, WHAT?
5.  No mention of transplant by doctors so far, what conditions make someone NOT ELIGIBLE for tranplant.

Lastly,  very upset specifically after reading so much about all of you.  This past Monday mom asked the "how long do I have question".  The doctor said 12 months!  After all I have read I have spent all week trying to convince mom the doctor does not know!!!!  It seems no two cases of cc are alike, atleast that I can tell.  So few cases annually with no clear protocol, anything is possible. We are just beginning our fight, the fact he said this is already sending my emotions into a rage and willing to go with 2nd opinion whatever it ends up being next week!  How do you know after 2, 3, 4 opinions which one to go with! We just want to start treatment whatever it is, gotta do something, feeling like everyday not doing something is a day lost.

Your thoughts are appreciated and GOD BLESS YOU ALL!!

Marions, thank you for the Welcome. She has has all her tests done with MD Anderson (Orlando) up till now.  We have an appt. next week with Mayo (Jax) for a 2nd.  We are supposed to find out if she qualifies for the trial tomorrow and anxious to start any kind of treatment.  She was supposed to start chemo but then the trial talk started.  Like many others the lack of treatment protocols is frustrating.  we were told Chemo won't "treat" her just fight off anywhere else the cancer  may be. I missed her last appt. and frustrated she did not ask what their actual recommended "treatment" will be outside of systemic focused Chemo. I'll intro on the introductions page and look forward to talking with others.  I am trying to get my mom on here to share and learn from those bravely battling, but we will see. Blessings!

My mom has just been diagnosed with CC in the last month and this Trial is being suggested.  It does not look like anyone has posted in a while and I wanted to see if anyone has participated or knows anything more about it other than what the doctors are telling us.  I will go to the intro tab later to introduce myself. Does not appear to be much in the way of a cure.  They told her 1 year with no treatment, is this typical?  She has no physical symptoms yet?