Topic: Failed first-line regimen

Hi Everyone.  My mom has been diagnosed with stage iv biliary cancer (whether its gallbladder or bile duct remains a mystery).  She has mets to supraclavicular nodes, femoral nodes, and adrenal node.  Initially, she was diagnosed with mets to lungs and aortic area, but these turned out to be blood clots.  She was also diagnosed with a minute squamous cell anal cancer.  Her latest ct report doesn't mention anything about the liver, but the doctor says the liver is definitely involved.  Because my mom was initially brought to the doctors care because of her anal cancer, we are being treated in the lower gi clinic.  I know this doctor is incredibly well respected.  He has been so kind and my mom loves him.  I know I have no standing to second guess him.  My frustration is that, after my mom initially responding to first line regimen of gemcitabine and cisplatin (i.e., tumor markers dropped by 75% and scan indicated tumors shrunk), her CA19-9 rose and some of the tumors began to grow.  Her ca19-9 is still 620 points below baseline and some of the tumors remained stable.  My concern is that the doctor says there is nothing left other than xeloda and that xeloda won't shrink the tumors.  He says we have a 50% chance of it holding the disease stable for awhile.  My mom is thrilled not to have infusions and feels better.  While I hope this continues, I'm not comfortable with hearing xeloda, which won't shrink tumors, is our last and only resort.  I've read about Folfox, GTX, avastin, tarceva, gem-cap-b, etc., and don't know why doctor isn't willing to be more aggressive, particularly when my mom is feeling stronger and we are fighting such an aggressive cancer.  It feels to me like the doc has given up the fight.  Maybe that's because his hands are tied with insurance; maybe that because the hospital doesn't do unproven off-label regimens; maybe he wants to make the latter part of my mom's life as comfortable as possible.  Having read all I can about this, I just don't believe this is all there's left.  Please let me know if you have any thoughts or have had similar experiences.  Your posts have always been a great comfort to me.  Thank you and God Bless. Kathleen

Re: Failed first-line regimen

Hi Lovemymom,

I am sorry that I can't help you with your chemo questions as my dad never had chemo. But I just want to let you know that I am thinking of you and your mum and I am sure that you will get some good advice here from others.

My best wishes to you and your mum.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Failed first-line regimen

Hello there LoveMyMom. It sounds like you have been doing all the right things
although it seems we really never know what is right with this mystery. All the "old" timers here know I view all this with my own type of treatment......GUT feelings. With that said, I would gather all the test results and send them to a well known clinic such as Mayo in Rochester or MD Anderson or etc, depending on what may be closer to you. They will read the test results and let you know what they think. Your Mom's ONC may be the nicest man in the world but I would rather take an ogre who is aggressive. Bottom line, if you have any doubts at all you are entitled to as many opinions as you need to make you feel confident.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Failed first-line regimen

lovemymon......Your well formulated questions are worth exploring with your Mom's physician. Due to the blood clots he may be ruling out the use of Avastin (Anti-VEGF.)  Although, incredible results have been obtained with any of the drugs mentioned however presently, the treatment for Cholangiocarcinoma resembles more that of a chronic disease or, at least, we are heading this way or, it may just be wishful thinking on my part. 
Still, I believe that a second opinion is warranted or, possibly, a third opinion.  I believe that patients or caregivers are concerned about upsetting the treating physician when consulting with other health care professionals and therefore, hesitate from obtaining such opinions.  But, contrary to that believe, I have yet to encounter a physician who did not welcome an informed patient.  And even it is the case; it should never hold back anyone from doing what is right for the patient.  Acquiring knowledge from other specialist is a right we have and becomes necessary when dealing with an illness.
You are a wonderful, caring and supportive daughter.  Your Mom must be so very proud of the child she has raised. 
Best of all wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Failed first-line regimen

Hi Lovemymom,

Both Lainy and Marion make excellent points about seeking a second or even third opinion for your mum. And I read your post again and you say that you get the feeling that your mums doctor has given up the fight, so perhaps another opinion as to what other treatment options may be available could be looked at?

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Failed first-line regimen

I think it is your mothers decision really.If she is enjoying more quality of life off chemo perhaps thats what she wants

Re: Failed first-line regimen

Thank you all for your kind words and thoughtful responses.  I am trying to get a second opinion.  I've gathered the records and, if I get anyone willing to explore my mom's case further, will at least give her the option.  Again, thank you all very much.  Kathleen