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?

xoxoxo
Claudia

Re: Where to now?

Claudia:  My husband also had no symptoms until he started chemo and it
was a down hill spiral from then.  I am not sure if they can help you but
Duke University just opened the largest and only (to my knowledge) cancer hospital.  They are innovative in offering care and services.  Not sure where you are located but maybe they can direct you in the right direction.  Best of
Luck to your dad and your family.

dcmac1972

Re: Where to now?

Dcmac1972,
Do you feel the chemo made his condition worse, or the cancer progressed? I've heard so many stories how the chemo actually made things more painful.

Dad's primary care is through MD Anderson and they have been wonderful there.

Re: Where to now?

Hi Claudia:

I am sorry to hear about your father, but it sounds like you are taking very good care of him, and MD Anderson is one of the very, very best places for treatment of this cancer. To respond to one of your questions, one difficulty with this cancer is that usually is late stage when diagnosed. Symptoms tend to  present very late. My symptoms appeared quickly over just a few days -- jaundice -- and by that time I was already Stage IV. I never experienced pain or other discomfort. In that is also a positive lesson. With treatment, even in late stage, many of us are fighting this and adding time and quality of life.

All the best to you and your father as you continue through this together.

Mark

Re: Where to now?

Claudia, I would like to follow the others and welcome you to our site.  Claudia, pharmaceutical companies offer a “compassionate use” program. To see if the drug company that makes the requested medication has a patient assistance program, check its website.  As far as I know the patient’s income cannot exceed 75 thousand dollars per year.  (Someone corrected me and thought it to be 100 thousand per year.) 

Leucoverin is used in combination with the chemotherapy agent 5F-U.  (Fluorouracil.) This drug combination has been around for many years; I am surprised to hear that your Dad has been declined by Medicare. 

The Cholangiocarcinoma Foundation is aware of the fact that our patients are not granted financial assistance from those agencies supporting patients with numerous, other cancer.  We are trying hard to bring about changes, but so far we have not been successful with our requests.   
We have learned that with this disease our boxing gloves come on therefore, dear Claudia, keep up the fight.   

Best wishes and hugs,
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: Where to now?

I believe that they said the oxapalitin (sp?) was the one not covered by Medicare. But Monday we start the oxapalitin and leucoverin at a county hospital to make payments for his treatments.  I was on the path to checking with the makers of xeloda to seek assistance but we went back to the original treatment.

I feel bad because as we kept hearing that our cancer did not have funding, dad said "I guess they think I'm a lost cause since this is terminal". Broke my heart. But we are NOT giving up!!

Re: Where to now?

Hi again Claudia,

I know from being on Xeloda myself that Genentech does have financial assistance for Xeloda, but only for those on commercial insurance. So, unfortunately, it does not apply to those on Medicare. I know you're going with a different treatment, but thought it might be good to know you are not missing some financial benefit by your decision.

Best, Mark

Re: Where to now?

Mark...I wonder then whether this is standard procedure for pharmaceutical companies not to assist Medicare  patients?
Hugs,
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