Treatment

The MRF's Executive Director shares his thoughts on the recent controversy involving a New York Times' editor and his criticism of breast cancer patient Lisa Adams.

We’ve heard the story before: a woman is treated successfully for her melanoma, only to have the cancer come back after ten years. How? Why? One explanation is something called “tumor heterogeneity.”

I recently met with a company called Delcath, which has a procedure designed to combat metastases to the liver. It works by infusing high doses of chemotherapy directly into the liver through the bloodstream. As the blood exits the liver, it is shunted outside the body and run through special filters that remove the majority of the toxic chemotherapy compound. The blood then goes back into the body’s general circulation.

Yesterday, the MRF hosted a live webinar focusing on how to manage melanoma treatment in a rapidly changing landscape. As we prepared for the webinar, I heard disturbing stories of many patients receiving care that is sloppy, outdated, or just wrong:

The FDA is launching a new program in which they will consider and incorporate the patient perspective into drug development.  They will choose 20 diseases for the program and the MRF is lobbying to have melanoma be one of them.  As we all know, the patient perspective is important in any disease, but it is especially true with melanoma. 

Here is my letter to the FDA expressing this great need in the field of melanoma.

Several years ago, country comedians Archie Campbell and Roy Clark made famous a sketch based on the phrases “that’s good” and “that’s bad”.  Archie:  My uncle died.

Roy: That’s bad.

Archie: No, that’s good.

Roy:  How come?

Archie:  He left me $50,000!

Roy:  Oh, that’s good.

 Years ago I heard a song by Harry Chapin: 

“If a man tried to take his time on Earth,

and prove before he died what one man's life could be worth,

well I wonder what would happen to this world?” 

The song is about trying to make a difference, trying to impact the world around you for good.  But it raises another question – one that is increasingly relevant in the cancer community:  What is the value of a human being? 

We live in an information age.  The lyrics of a long-forgotten song, the email address of a high school sweetheart, the cube root of 97 are all available in microseconds through the power of the internet.  Yet even with so much information at our fingertips, sometimes critical information does not reach people who need it to survive.    

The online community for melanoma patients has been abuzz today about a report by Brian Williams on a patient who had a remarkable experience with melanoma.

She was being treated with Yervoy, one of the two new drugs approved last year for metastatic disease, but was not responding well.  Her multiple tumors were growing and a particularly large one was pressing against her spine, causing severe pain.

I have been around hospitals, doctors, and life-threatening illnesses for a large portion of my life, so I was recently taken aback to learn that something I had heard said over and over in those settings might actually be insulting.

People respond to serious illness in different ways.  Some people dive deep into the internet or library and read everything they can.  Others turn to family, or to a series of second opinions.  Some simply put their trust in their doctor and say, “You know what is best, just tell me what to do.”