After our meeting with the oncologist at MD Anderson last week, I've been doing more thinking and research. The only chemotherapy they've offered me is FOLFOX, a combination of 3 drugs that are the approved standard of care for Stage III colon cancer. That lovely standard of care that produces a 44% 5-year survival rate. I asked about some other, newer drugs that I've read about that are molecularly targeted therapies. Specifically, there's a drug called cetuximab, which is approved to treat stage 4 colon cancer (once it's metasticized to distant organs). For my technically-oriented friends, I put a little more info on cetuximab below.
So what does this mean for me? Well, there's a clinical trial going on at hospitals across the country to compare results between FOLFOX alone and FOLFOX+cetuximab in stage 3 colon cancer patients. The trial isn't being run at MD Anderson, but Baylor's cancer center here in Houston is a trial site. So I've been talking to them. There's a pretty narrow window for enrollment and a specific criteria. I have to be less than 8 weeks post-op and I'm 3 1/2 weeks right now.
So what do I want to happen?
- I want to get accepted into the trial.
- I want my insurance to pay for my treatment in the trial (or at least the vast majority of it). In general, they don't cover clinical trials, but hopefully they'd cover all the costs related to the standard chemo and we might have to pick up the costs to administer the cetuximab (the drug itself is free since it's a trial).
- I want to win the coin flip. Trial participants get randomly assigned to one of the two study groups. So I could enroll and it's still 50-50 that I'd just get the standard chemo. And I really, really, really want the cetuximab.
- I want this all to happen really fast.
I know this may sound flip-floppy. I really wanted to get in to see an oncologist at MD Anderson, but when I did, they only offered me the same chemo I could get anywhere else. And honestly, I know that's all they have approved, but I'd sure like something more effective. I just don't like the odds. Maybe my cancer would respond really well to that treatment regimen. But maybe not. In the majority of people, it doesn't work. I just want something better. From everything I read I honestly believe that cetuximab will be approved as part of the standard of care for stage 3 colon cancer within the next 10 years. But I can't wait that long. So send all your positive energy, thoughts, and prayers and we'll see if we can't stack the deck in our favor a little bit.
From The American Cancer Society's Complete Guide to Colorectal Cancer...
Cetuximab is what's called a monoclonal antibody and it fits, like a key into a lock, into epidermal growth factor receptors (EGFRs) on the surface of a cancer cell. When it fills these receptors, the epidermal growth factor has no place to attach. This makes the EGFR unable to activate the cell and it stops the cancer cell from growing. Unlike chemo, that just goes and kills everything in sight, this type of therapy is more specific and targeted to the cancer cells. Cetuximab alone and in combination with other drugs has been repeatedly shown to shrink tumors in patients with advanced colorectal cancer whose tumors grew despite standard chemo.
11 comments:
You don't sound flippy floppy. You sound educated and proactive and ready to fight. We are all praying for you to get the best tools to help you win. Positive thoughts your way! Margaret
Go get em, Girl. Lots of positive energy coming your way.
Love,
Auntie Carol
My prayers are with you all the way.
Your proactive, researcher-y, attitude is exactly what is needed! I support you 100%! Allison
PS - you could have told me this on the phone!
We're thinking about you and sending lots of thoughts and prayers your way. Don't feel bad at all about switching away from MD Anderson -- you have to do what feels right to you. Keep us posted!
- Steph
Lisa Marie,
I agree with everyone else. I think it is important to be as knowledgeable and involved in the decision-making regarding your health as possible. Postive thoughts and prayers go your way....Love, Kim
I agree, too. Go for the trial, and we'll pray you get accepted and get the new drug.
Knowledge is power!! Positive energy, prayers and many thoughts coming your way!!! I think of you everyday and am hoping for the very best for you. Tiffany Ristroph
Go for the trial. Go for it. The worst that can happen is that you get the standard treatment, which is not bad at all. The upside is that you have the chance of the new drug, and I love the targeted nature of it. Baylor scientists are very, very, very good (former Baylor trial patient and former Baylor outside regulatory health care attorney speaking here!)
Sounds like you have been very busy researching which is awesome. Your attitude amazes me. Allot of people see a doctor, and what the doctor says they do. Good for you for thinking "outside the cancer" :) I wish you all the luck in the world. Oh and tell Sean hi..I know hes going through allot with this too.. take care and talk to you soon.
As always you have all my prayers and positive energy.
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