Happy: A Quest for Life After Death

Wednesday, November 07, 2007

The Watchful Waiting Is Over

A clinical trial may not be in Mat's future after all.

We met with Dr. Ryan today, who said that Mat doesn't qualify for either of the clinical trials he thought he might be a candidate for because of drugs he took last summer.

I suspected that might be the case. During one of my sleepless nights spent surfing clinicaltrials.gov, I decided to go for extra brain damage and focused on exclusion criteria. All of the trials of drugs that act as VEGF inhibitors (like the ones Dave was looking into for Mat) exclude people with Mat's treatment resume.

But ... there is an alternative!

Another new drug, sunitinib, used primarily to treat kidney cancer, has also been shown to shrink tumors in some people with pancreatic endocrine tumors. It's a relatively simple treatment -- there are no infusions or hospital visits, just take a pill every day for 28 days, rest for 14 days, then start again. Side effects are limited compared to chemotherapy (primarily fatigue), so it should be a relatively pleasant experience.


There is a catch. The drug isn't specifically FDA-approved for pancreatic endocrine tumors, and probably never will be. The problem? It's an orphan disease. There are not enough people with this type of cancer to make it worth the drug company's effort to get the approval.

And ... insurance companies don't like to (and don't have to) pay for drugs that are not specifically approved for the patient's disease. So -- insurance company, stop reading here -- the plan is to submit the prescription to be filled and hope the insurance company doesn't have a system to catch and reject it.

Failing that, we try an appeal to the insurance company, then the drug company, then the bank for a second mortgage on the house.

Keep your fingers crossed for Plan A.


Heather S. said...

Hi Kimberly-

I am sorry to hear that Mat doesn't qualify for the clinical trials. That sucks. As far as your comments about getting the drugs that you want him to try, don't rule out contacting the pharma company directly and just asking them for it. When Andrew was undergoing treatments we got his meds straight from Schering Plough. Granted he was a grad student at the time and we qualified as a "hardship" case, but his meds were $5700/month and they sent it to us every month, for free. I had to do a load of paperwork to get it started, but it sure was worth it. He took the drugs for 11 months. Good luck. I think of you all the time.

Heather Parry

Anonymous said...

Hi Kimberly:

Why doesn't it surprise me you were up in the night searching clinicaltrials.gov. I am so glad to hear that there is an alternative treatment. It sounds like there are some possibilities that you can get the drug paid for. I'm hoping for the best.

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