new information, new plan

Mark and I met with my oncologist last week to go over the effectiveness of the Navelbine as well as the results of the study I am now part of.

The bummer is that the Navelbine is not working, so it’s on to something new.

The great thing is that the report from the study gave us a bunch of options. The top ten options it suggests are ones that my doctor says he would not have thought of–mainly because they are related to the hormones that feed the cancer (my doctor thought we were past those) or they are drugs that are not normally associated with what we had believed my cancer to be. For instance, some of them are used for HER2-neu positive cancers whereas we believe mine to be HER2-neu negative.

So, starting on Friday I began a new oral medication which has some hormone elements to it. It is often prescribed for AIDS patients and people struggling with anorexia–it is a major appetite stimulant. I find myself waking up and thinking about food.

My doctor is also working on getting an IV drug approved by my health insurance. This will be either Tykerb, a chemotherapy, or Herceptin (this is the drug often used by people with HER2-neu positive breast cancer). I am hoping that the Herceptin gets approved since it is administered every three weeks and has minimal side effects.

It always takes me a few days to digest a change in treatment. I need time to wrap my head around it and get into the game again. I’m getting there. My mom pointed out yesterday that it’s been almost a year since we’ve had a drug that has been really effective. No wonder these game changes get tiresome.

But Mom also pointed out how providential it is that I am part of this study and that the drugs that are recommended for me are ones that even my cutting-edge doctor would never have anticipated. This is truly extraordinary and we are so grateful to God for the opportunity to be part of it (and to the generous folks who funded it for me–you know who you are!).

Our visit with my doctor was a long one and, as usual, Mark and I hang on each word and phrase that he says–tossing them back and forth to one another as the days go by and we process what we heard. But there is one phrase that my doctor said that I return to repeatedly. As we were looking at the list and I saw a drug that I had seven years ago which I found terribly distasteful I said, “do we have to do Epirubicin?” His response, “Well, we’ll probably do all of these over the next 25 years.” You can imagine the satisfying way that simple phrase from my trusted physician turns over in my mind as I calculate and bargain and calculate again.

Hope is a lovely thing to get for Christmas.


I didn’t do a very good job explaining the study that I’ll be entering. It’s not a comparison of others like me, it’s a comparison of the genetic mutation on the DNA strand of the tumor against the world literature. So, the drugs that have been developed for the specific genetic problem will be recommended. When I asked if what the chance would be of it coming back with no recommendations, my doctor looked at me incredulously and said, “None.”

The fight, then, is definitely getting personal. YAY!

it’s about to get personal…we hope

This week is an important one for us. I will be having a lung biopsy on Wednesday. A sample of my tumor will be sent to the Van Andel Institute where it will be genetically mapped. It will then be entered into a database containing the information of many other people whose tumors have also been genetically mapped along with our medical histories. A report based on this information will then be generated to recommend treatment for me. Rather than just knowing whether or not the cancer is HER2 negative or positive, etc., this goes down to the actual DNA. It’s as detailed as it can get–and as unique to each individual person and his or her particular cancer as it can get. This is called “personalized medicine.”

I am not worried about the lung biopsy. My only fear is that the report would come back with no recommendations. I know that even if this were the case the Institute will continue to collect information and will continue to generate reports as time goes on. But there is something about having an immediate recommendation that would be extremely heartening.

So, cancer, look out. This fight’s about to get personal…we hope.