Topic: To chemo or not to chemo...research indicates its is NOT for CC ...??

To recap, my husband Rick was diagnosed with CC about Feb 2007 in emmergency when Jaundiced...he was stented, and got back to normal. (he is intrahepatic and tumor on liver huge at 15 cm, with friends)  I studied every day, just on this particular cancer, (it can be endless) and almost everything indicates chemo just doesnt work. They seem to want to give it anyway even tho they all admit the numbers dont back it up. We tried chemo, the general cook book therapy they start everyone on, and the neuropathy opened his eyes and he went another way.  Alternative, diet, absolutely no sugar (in fact the whole family has given it up since cancer seems to thrive on it) Docs did not say anything about what he could do diet wise to help, only come in and put insurance money in the pot. ACtually they still are pressing him to try different chemos, and he says no way. He is going for quality, and I admit it was a great summer filled with travel, high energy sporting etc....we figured use that energy while its still here instead of letting chemo make him sick. He is slipping slowly, and we feel a bit guilty knowing we made a choice the oncologists dont seem to like. But the more research I do the more glad I am he chose this route. The Americans seem to be backwards with cancer, not testing to see if one chemo can work better than another. I guess I just dont get it.  How are the rest of you making your decision on what therapy to choose....and is there guilt involved if you shun the system?   robyn

Re: To chemo or not to chemo...research indicates its is NOT for CC ...??

Hi Robyn,
Plenty of people on this site go the route of NO CHEMO - and I wish I had pushed my mother harder to NOT try it! On the other hand, there are those who have had very good results - it's all individual and some people respond well to the same chemo that does nothing for another person. You shouldn't feel any guilt, as many people opt for quality - and other people find chemo side effects aren't that bad, so they think it's worth it. Chemo made my mother so miserable and had so many side effects - but I know others who had the same chemo and they didn't feel too bad and their lives were extended.
You and your family made a totally individual and valid decision - and many people here adhere to dietary restrictions and natural supplements too, so there should be some people you can chat with about that and maybe get some new ideas. This cancer is still pretty unknown so there are many different approaches to it - some people are undergoing experimental therapies and drugs, some use diet and herbs, it's all up to you and if an oncologist makes you feel guilty, tell him to pound sand! Their job is to sell chemo and if you don't want it, they don't want to know you.

Best of luck to your husband and you -

Joyce

Re: To chemo or not to chemo...research indicates its is NOT for CC ...??

Robyn,

As Joyce said above, no two people seem to react the same way to the same treatment with this cancer.  Further, if the patient is not a surgical candidate, there is currently no standardized chemotherapy treatment for cholangiocarcinoma.  Therefore, you'll find that many patients on this board are on very different types of chemotherapy.  Taking all this into consideration, the only "right" course of treatment is the treatment option that fits best into the patient's life - what option best fulfills the patient's priorities in quality of life, length of life, etc.  At the end of the day, it is important to remember that the patient dictates the treatment - not the oncologists.  The oncologist is only there to present the facts so that the patient can make an informed decision.  So please don't feel guilty for going against what the oncologists think.

I am puzzled by your statement that American doctors do not research whether one chemo works better than another.  This concerns me that perhaps the oncologist you saw only offered one chemo, and represented that it was the only option.  I hope this is not the case.  The truth is that the research oncologists around the world, US included, are testing many different types of chemos, chemo combinations, and chemo/biological agent combinations in hopes at finding an answer for the digestive cancers (including cholangiocarcinoma).   The main issue is that, to date, none of the trials has provided a clear "standard of care" for cholangiocarcinoma.  Some of the clinical trials currently recruiting participants can be found here: http://clinicaltrials.gov/ct/search;jse … ocarcinoma

My thoughts and prayers are with you and your husband - I hope the restricted diet continues to provide a good quality of life, while holding the cancer at bay.

- Sara

30-something caregiver