I share your frustration! There is information out there that just hasnt been written about yet. I am starting radiation and zeloda in a couple of weeks based on a protocol studied in here in Sweden. I found the clinical trial annoucment (keyword CORGI) but nothing has been published on it. I am going to benefit from the research because Sweden is small and heptobilary cancers have designated contact oncologists, but others will not. That is frustrating. How much information is out there but not written up?
From another study, I am also not getting oxilaplatin with the mix since it showed there was no benefit when added to radiation and xeloda. There is something special about adding radiation to the mix that cancells out the benefit of oxilaplatin. If these things would just be published, just think of the information AND cost savings AND quality of life. Xeloda and oxilaplatin go hand in hand like gemzar and cisplatin. But oxilaplatin can have sever side effects in relation to cold sensitivity. I am so happy that I am NOT getting oxilaplatin and that I can continue swimming, drinking ice tea, and sitting outside in the cool spring air. These things are important for quality of life. But how many patients get oxilaplatin with the xeloda during radiation? As a patient, we all like to have everything thrown at us in the hope that it might help, but if it doesnt, why suffer? These things should be published!
Cancer is a word, not a sentence.
36 year old patient with buckets of hope