Happy: A Quest for Life After Death

Sunday, November 18, 2007

Two Days Down ...

The Sutent (sunitinib) arrived in the mail on Tuesday -- all $5,500 worth. To cover the next month.

Co-pay: $50. Big sigh of relief.

Dr. Dave reported when we met with him on Friday that only a moderate amount of arm-twisting was required to get the insurance company to pay for it.

We also got the results from Mat's latest scan on Friday. The tumors in the liver are a bit larger -- about a centimeter. The lymph nodes next to the pancreas are also "involved," as are others in the abdominal cavity. (Don't you love medical euphemisms?)

Of course I wanted to hear the miracle speech: "Did someone give me the wrong scans?I've never seen anything like it! I just can't explain it, but the cancer is gone!"

It's going to be a good speech, so I can be patient.

In the meantime, the bottom line is that things are a little worse. Not a lot worse -- just enough worse to stop the watchful waiting and start the watchful pill-popping.

Mat started the Sutent on Saturday, and took a second pill today. So far, he says it makes him feel a little tired and down for a few hours, and then seems to wear off. He's tried taking the pills in the morning; now he's going to experiment with taking them at night in the hopes of sleeping through the side effects.

Who knows? Maybe they'll help him sleep better at night.

Now if they would just do something about his snoring ...

Thursday, November 08, 2007

So Far So Good

Mat submitted the sunitinib prescription, and it looks like it will go through. It required some extra involvement from Dr. Ryan because of the expense, but no flags raised yet about the FDA approval issue.

Small sigh of relief today, and I'm looking forward to a big sigh of relief when the pills arrive in the mail next week.

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.