Thursday, December 20, 2012

Just the facts, ma'am

Compare the nodules. Left panel is from Oct 18.
Right panel is December 10. 
Lisa Kee, Padmatara, Julie and I met with Dr. Nelson today.

The best case outcomes for chemotherapy: The ideal is that there are symptoms and the chemotherapy relieves them by shrinking the cancer. If there are currently no symptoms, chemotherapy would delay the symptoms developing. She said she didn't think chemotherapy was worth it if it only slows progression. I might try it, until it starts to suck, I don't know. She can give me ones that are known to be better tolerated. They won't necessarily work any worse than anything else!

A different view. If you compare at around 10 o'clock
from the trachea (black hole in the middle)
you can see lymph nodes getting much bigger.
My genetic markers:
  • Negative for HER2. 
  • Positive for EGFR immuno-histo chemistry
  • TBA for EGFR mutation.
If the EGFR mutation test comes out positive, she will probably recommend a drug called Tarceva (doesn't cause hair loss in case you're wondering.) If negative, then possibly CPT-11 combined with Cetuximab. She's going to call Rebecca Brooks (the UCSF gyn onc I saw in February for a second opinion who specializes in studying metastatic disease) and see if she has any ideas. The info I had about Kaiser only being able to use FDA approved drugs isn't quite right. Dr. Nelson said everyone has to use drugs approved by the FDA, except clinical trials. So looks like getting treated at UCSF would depend on doing a clinical trial there. So far we haven't found any anywhere.

I have written to Dr. Block's place asking what the potential benefits of consulting with them might be (since my insurance won't cover being treated by them, and Dr. Nelson doesn't think it's a good idea to get treatment in a place I don't know anyone.) Also, Nancy's going to research a drug used for adenocarcinomas in a 2005 clinical trial called RAV12.

Doc Nelson's shoes
and my finger.
They're around the same size
Other possible drugs she mentioned: adriamycin, doxol, xeloda, temsirolimus, sunitinib...

Median metastatic survival time is 9-12 months.* (It's been six since we first found out about the nodules.) The only part of the meeting that was intense for me was asking if I would eventually suffocate. She said morphine works well for dealing with shortness of breath. I will talk to Carol the social worker about hospice care, etc. Signs that it is nearing the end include getting weaker and fatigued. She also pointed out that I will know when time is getting short.

She said cancer patients are more prone to getting blood clots on planes, so need to make sure to stretch on the plane.

* Realizing I don't really know what those stats apply to. Overall cancer? My kind of cancer with or without treatment? And I forget what median means....

Remember these kids? They are great.


  1. Median means half the people are above the number, and half are below, getting rid of the statistical "noise" of outliers that you get with average (mean). That is more or less all I know about statistics, so I'm not sure how that works with a range, other than a lot of people would actually be within the range. The Wikipedia entry on median was incomprehensible.

  2. Yes, median means the mid-point or middle-most number as compared with mean, which is an average (adding all the values and dividing by the number of values). A median number can be above or below a mean. But statistics tell only part of the story, and maybe not the most helpful part. Cuz as we know, there are lies, damn lies, and statistics! It sounds like it still all comes down to best guesses and how you feel, really. It won't be that fine-grained a prediction, until it is.

    In other news, I dreamed about you, was it last night or the night before--you had on the most amazing hat. I thought it was your hair, at first, and then realized it couldn't be. But I forget now any other details except the color red was involved and it was really tall.