Friday, May 28, 2010

Status Update

As most of you know, on May 13, 2010, I had surgery to remove a malignant lymph node and send it in for testing to determine if I could be part of a clinical trial involving a new drug, crizotinib, which is targeted to adenocarcinomas (non small cell lung cancer tumors) which have something in their genetic makeup termed an ALK rearrangement. Now you will have to bear with me, because my understanding is fairly limited, but here goes my attempts to explain.

Current research into successful treatments for lung cancer indicates that non small cell lung cancer is not monolithic but rather an aggregation of many types of tumors, and testing for genetic mutation can provide information that can be used to tailor the treatment to the tumor.  The first breakthrough occurred with testing tumors for EGFR (epidemral growth factor) expression mutation (or "EGFR") and those who tested positive for EGFR  were greatly aided by two drugs, Iressa and more importantly Tarceva.  However, these positive results were limited to  individuals whose tumors tested positive for EGFR.  Here's a good summary of the EGFR mutation from

I was prescribed  Tarceva in January 2010, after my first line treatment (chemotherapy) failed to keep the tumors from growing, without being tested for  EGFR  because 1) there was no tissue left from the two needle biopsies to test and 2) GH did not want to pay for the costs of the testing.  Initially it seemed that it was an acceptable risk to take without the testing, because the first round of post-Tarceva ct scans in Feb. 2010, showed shrinkage in most of the tumors.  However the April 28 ct scans showed that the tumors had regained their size and the mediastinal one had in fact doubled in size since the December ct scans. So it appeared that my tumors were not, in fact, positive for the EGFR expression mutation.

However, if my tumors could be formally shown to be negative for the EGFR expression mutation, they could then be tested for the ALK rearrangement (or "ALK").  If the tumors then tested positive for ALK, I could be enrolled in a clinical study of a new drug, critzotinib, which has shown great promise stalling  or even reducing growth in tumors with the ALK rearrangment. 

So, the lymph node came out on May 13, and I have been waiting for the test results.  Last Saturday night, I sent an email to my oncologist at Group Health, asking when the EGFR results would be available.  He wrote back to me on Tuesday, May 25:
I have spoken to two people in lab at UW. One says they run the test every week. The other says they have your sample, hope to submit it by the end of the week, but could take 2-3 weeks for results. We'll keep tracking, but seems unlikely we'll have anything for at minimum another week.

I forwarded this email to Dr. M at the Seattle Cancer Care Alliance, almost as soon as I received it, and asked him if he could help clear up the dichotomy.  21 minutes later, Dr. M emailed me back:

I talked to them today.

The first test should have results by the end of the week (so they tell me). After I spoke with them they will start simultaneously the ALK testing as well.

More by the end of the week
So today came.  No word.  I had a followup visit in surgery today.  When I was first interviewed by the surgery nurse, she said that the results were back according to the screen she pulled up with my name.  But she could not give them to me, although the Physician's Assistant, who I was seeing in lieu of the surgeon (because he was on vacation) could.  So Diane, my friend who went with me, and I got quite excited.  Unfortunately, when the PA showed up these were the results in the computer:


COMMENT:  A block is sent to the University of Washington for EGFR testing
A) L. supraclavicular lymph node (sent fresh)

Received in a container labeled with the patient's name and "left supraclavicular lymph node biopsy-in saline" is a 1.6 x 1/3 x 1/0 cm encapsulated tan pink lymph node candidate, with attached fat.  The lymph node is serially sectioned to demonstrate pink slightly firm and fibrous parenchyma, and is entirely submitted in 1-2.

Testing for EGFR is requested per Dr. W.  Per Dr. R, the specimen is formalin fixed and embedded for EGFR testing from the paraffin block.

The lymph node is almost entirely replaced by moderately differentiated adenocarcinoma.  There is an associated desmoplastic stromal reaction.  Tumor cells show clear cell change as well as cystic areas of necrosis.  Tumor extends to the edge of the tissue.
This initial GH read on the node was done May 14, but not released to MyChart where I could have viewed it.  And the PA confirmed that there were no further testing results at Group Health.

At 4:28, I emailed Dr. M and asked if he had heard anything about the EGFR testing.  He called me at 4:29 to tell me that the results of the EGFR testing were that the two major exons had tested negative for the EGFR expression mutation.  Which meant that the tissue sample could now be tested for the ALK rearrangement.  Dr. M said that  will be done next week and the results should be available, again by the end of the week at the latest. 

I am not there yet, and I may not qualify in the end. But I have learned (or relearned) a few things over the past two weeks.


odp said...

So they had the results on May 14 and you had to pry it out of them?! . I hope and pray that the other test turns out the way you want, and that you get into the clinical trial!!!

Rooting for you, as ever,

Deborah said...

Well, excellent that you tested negative for the EGFR! Amazing that getting the test results back from GH is such an arduous process...

moe99 said...

Odp: the May 14 GH results were simply preliminary results. The EGFR testing was done at UW--they have the facilities to do the genetic tests, while GH does not. So the May 14 findings did not indicate my EGFR expression mutation status. But, of course, they could have released them to me as a courtesy.

Anonymous said...

I'm glad to hear that they are finally making progress so that you can find an appropriate treatment!