Topic: Where to now?
Hello... My name is Claudia and my 76 year old father was diagnosed with cc on January 25, 2012. He was referred to MD Anderson after his liver enzymes were elevated from a cholesterol test and a tumor and lesions were found on the liver with an ultrasound. Upon diagnosis he was informed that he was not a surgical candidate due to the large tumor sitting on the portal vein so we started chemo treatment of gemcitabine and cisplatin. We did 8 rounds and the scans revealed that the large tumor and lesions on the liver were shrinking but the nodules on the lungs were growing. We continued another 8 rounds but this round was a bit more difficult because his platelets were always low. I also have to share that he did so well with no side effects (other than the platelets) of the chemo. The latest set of scans showed that the tumor maintained in size but the lesions were growing and also new ones were forming on both sides of the liver and the lungs. Our doctor decided to change chemo because she felt that the cancer was growing resistant.
Up until this point, my dad has NO symptoms of the cancer. No fatigue, no jaundice, no pain whatsoever! He has maintained his weight and a well appetite. It's hard to believe that this is growing inside of him and he has no symptoms. In fact, to this day, my mother believes that the doctors must be wrong because he is fine. I have hope but also have to be realistic with all the lab reports of this horrible cancer.
The dr recommended changing the chemo to (I hope I get the correct names) leucovorin and oxaliplatin. Well, due to my dad having only medicare, he is responsible for his 20% up front (which I have been paying up until this point and don't mind at all because I would do anything for my hero). With the new regiment, his portion would cost us 1200 every two weeks in addition to the pump. His chemo doctor recommended that we try xeloda hoping that the cost would be better. It wasn't. Xeloda would have been 600 every three weeks. I have been referred to numerous agencies that can maybe assist with his co-pays. I have yet to find any agency because I always get this answer, "I'm sorry... We don't have any funding for that particular cancer." And the CancerCare Copayment Assistance Foundation told me "We've never heard of that type of cancer...." I have grown so frustrated!
This afternoon I talked to the doctor again as to what our options would be and what would be the best path to take. He recommended going with the original chemo of leucovorin and oxaliplatin and have it done at the county hospital to make payments.
This is where we are now. I've been on this site since January reading up on cc. My dad is the best man you will ever meet. I am glad that I am here and have seen so much support for everyone here.
I guess my two main questions are...
Is it rare that dad be considered stage 4 and has been diagnosed for over 6 months with absolutely NO symptoms whatsoever?
Does anyone know of any agencies that are willing to help with copayments of patients with Medicare only?