Update on MD Anderson Clinical Trial and Dad

unclaw2002 Member Posts: 599
edited March 2014 in Esophageal Cancer #1

I joined my dad in Houston for his evaluation appointment at MD Anderson. I have to tell you that the facilities, the staff, the doctors there are amazing --- there are so many other hospitals there it is like a city unto itself and so much construction. Not sure about the Health Care bill but construction and activity seems to indicate that the “Health Care Industry” is alive and growing.

My dad is doing great. He is walking, talking, eating, driving and generally being himself. Making friends with everyone he sees and he has a great attitude. God bless him. I think many of us have seen so much grace from the people we love who are fighting this cancer – I certainly have seen that with my father. We talked a little the night before the meeting with the doctor about what options there were if he was getting the placebo and he looked at me and said he would still want to see if there was some other treatment. I asked him if he was sure and he said that he had a lot of life left to live, things to do, places to go and people to see.

After my dad’s scans and during our meeting with the doctor it was apparent that either my dad was receiving the placebo or not responding to the drug. In any event he is no longer in the clinical trial. It was an especially difficult moment for all of us because he, actually all of us, had been so hopeful during the last 8 weeks.

The tumors in his liver have grown although no new ones have developed, so some good news. And as of right now there aren’t any other areas where the cancer has taken hold. Dr. Ajani told us something interesting that I hadn’t heard before. As he showed us the scan from December and the new one taken the day before he said it is important to understand something about the liver. Generally, he said, a person only needs about 15% of their liver to live to 100 years old. So we have lots of extra liver capacity and when I look at this scan you still have a lot of healthy liver. It was really encouraging to hear those words. He said that my dad was not near a situation in his liver where dad was facing imminent liver failure and that what he wanted to do was find a drug combination that would stop the tumors from growing. He said he wanted to use a combination of chemo which has successfully been used in renal and colon cancer with metastasis to the liver.

Dr. Ajani prescribed an eight week cycle (an infusion every two weeks) of : Irinotecan( also known as Camptosar®and Camptothecin-11) http://www.chemocare.com/bio/cpt.asp and Erbitux(also known as Cetuximaband C225) http://www.chemocare.com/BIO/erbitux.asp. These drugs are FDA approved for renal and colon cancer which has metastasized to the liver but are “off label” (non FDA approved for treatment of esophageal adenocarcinoma at the gastric junction). The Irinotecan stops the cell division and Erbitux is a targeted therapy targets and binds to receptors on the tumor to block an important pathway that promotes cell division and results in inhibition of cell growth and apoptosis (cell suicide). I gotta tell you “tumor suicide” sounds like a great idea to me.

Ironically, my dad had tried to get into one of the clinical trials last January with Erbitux but couldn’t because he was unable to take cisplatin because of the side effect on kidney function. Anyway, I thought my biggest battle was going to be getting my dad to agree to take the treatments at MD Anderson instead of home in New Orleans (we have been there done that and I wasn’t going to go through that again). But that isn’t my battle. Right now I need to do some research and find out how to get him the Erbitux. Medicare won’t pay for the treatment because it is off label.

This is what I have been told so far . .. go ahead and pay for the treatment yourself (I think somewhere between 10 and 20 thousand dollars for the first cycle), get denied coverage, appeal the denial and proceed through the 90+ day administrative appeal law process and hope you can overturn that ruling. Oh and by the way that appeal is only good for the “initial prescription course” if you get a second round of the chemo and Medicare denies you again you have to go through the whole process again from scratch. Now since I am a lawyer ---- I can tell you that this is a really unsatisfactory strategy so off we go this weekend to see what options are out there.

If anyone has successfully been prescribed an off label chemo drug that Medicare approved and/or denied, but were able to get it paid for I would appreciate your input. I was told to research the “Drug Compendia” and see if any “off label” uses for Erbitux appear in there for Esophageal Cancer, but I haven’t been able to comb through the 4 resources yet.

We never thought that Medicare wouldn’t pay for the treatment. As a result, when we were at the hospital with Dr. Ajani we didn’t ask for other options– because to tell you the truth my dad was so excited at the prospect of receiving the Erbitux. As I sat in the room I thought perhaps this was a gift from heaven, a reprieve of sorts a reward for trying the clinical trial and getting the placebo. I still believe that everything works for the good. I can tell you I’m not sure at this exact moment what that is, but I still believe.

I thank you in advance for your help and prayers. We continue on the path. As most of you know we have certainly gained much knowledge along the way and continue to grow in wisdom and grace. I am thankful I could be in Houston with my dad this week, I am thankful he is still with us, pain free and enjoying life and I am thankful for all of you here on CSN. As he was filing out one of the many forms on Thursday that kept asking about how he felt, he said heck I feel pretty darn good for a guy who is 79 years old with Stage IV cancer. We all laughed and the nurse gave him a hug. It really brought tears to my eyes. There really are precious moments along this rocky road and sometimes they come at the most surprising moments.

Much love,


  • cher76
    cher76 Member Posts: 292
    I am sorry to hear

    I am sorry to hear the clinical trial did not work out for your dad. I understand how disappointing that must be. The good thing is it doesn't sound like he is too worse for the wear. I can't imagine how frustrating it must be to be told that Medicare will not pay for the next round of treatment. This whole experience has been an eye opener for us in many ways. We are fortunate that I had just retired from teaching this spring and we are now covered by my teacher retirement insurance. So far they have paid for everything no questions asked. I am bracing myself for the time when that might change. My husband's previous treatments were running about $30,000 every two weeks. Now I see how difficult it must be for people who have no insurance or a policy that does not cover things.
    Please know that we are praying for your dad and hope all goes well with his next course of treatment. Please keep in touch.
  • Callaloo
    Callaloo Member Posts: 135
    Off label use of Erbitux
    Thanks for the update on the trial. For me, it was bad news/good news. Glad to hear your dad seems to be doing ok despite all that's going on. It gives us all hope.

    I have a very good private insurance policy (haven't found one better) that has paid for everything, every drug, every scan, second and third opinions, you name it, without question and without prior authorization, until my doctor recently ordered a KRAS test for Erbitux, which he is willing to prescribe off label. I got the letter from the insurance company a few days ago, denying coverage, for two reasons. The first one I could understand-- I'm not currently in treatment, the test was preemptive, so the test was deemed not medically necessary. But the second reason was the same one for which your dad is being denied coverage -- Erbitux is not FDA approved for EC (exact wording was "the NCCN guidelines for EC do not seem to include indications for KRAS testing..." and Erbitux).

    So I would also like to hear from anyone who has had this prescribed off-label (outside of a clinical trial).