Rather than rewrite what happened, here is the letter I sent to three of the Group Health oncologists following our appointment (and after a celebratory brunch at Portage Bay Cafe). Edited to note that the primary author was my daughter so that I got the medicine right--Thanks dear!
Dear Drs. C***, F****** and C*******:
I am writing to update you on my meeting today with Dr. R***** M***** at SCCA. Dr. M***** reviewed the medical records GH sent over yesterday, which were requested Monday. Unfortunately, the latest ct scan read from April was not included in the records, but luckily I had printed a copy and was able to provide it to Dr. M***** during our appointment.
Based upon his review of the records, and his examination, Dr. M***** recommended that I discontinue taking the Tarceva tomorrow. The substantial increase in tumor size coupled with the toxicity, particularly on my legs and arms, led him to the conclusion that I had failed second line therapy with Tarceva at this point, or at the very least, the toxicity far outweighs the observable benefits at this point.
Dr. M***** indicated that he would like me to pursue a clinical trial at SCCA for patients with lung cancer with an ALK mutation. Two of the study's exclusion criteria include: less than 10 pack year smoking history (which includes me), and EGFR-negative tumors. Unfortunately, due to the insufficient tissue sample done on my CT-guided biopsy this fall, EGFR studies have not been performed on my tissue samples. Dr. M***** recommended that I have these studies done at this time to determine whether I would be eligible for this clinical trial; he stated that he suspects that I am EGFR-negative, given my poor tumor response to Tarceva, but I cannot be consented for the trial without this study. Additionally, it seems to me that these studies would be particularly indicated as I move forward with therapy, as the tumor growth over the past two months seems to indicate that I have failed second line therapy with Tarceva, and I would assume that this information would be useful in directing us for future treatments, regardless of whether I participate in the trial.
Dr. M***** was interested in discussing this with you today; he did try calling Dr. C******** while we were in the office, but unfortunately, he was out of the office. Dr. M***** did leave a voicemail, and would like to get in touch with you as soon as possible regarding this; I am also cc'ing him on this email if that is an easier method of communication for you.
I would like to proceed with this testing as soon as possible, in the next week if feasible. Dr. M***** suggested that we excise my subclavicular lymph node that had previously been biopsy positive; he noted that this would be a relatively simple procedure, and should offer plenty of tissue for all of the necessary studies. Please let me know as soon as possible if you agree with this plan and approach, as I would really like to get moving on things.
Thank you very much for your help, and I look forward to hearing from you soon.
In short order, I heard back from Dr. M***** at Seattle Cancer Care:
Dear Ms Cullen
Dr C******** was kind to call me in his day off the clinic and we discussed obtaining a biopsy of the LN in your L lower neck. He told me that he will confirm that there is not enough tissue left from the previous biopsies and would organize the new procedure. We briefly discussed the possibility of you receiving therapy here in this clinical trial with a pill and he seems to think that it would be possible
I hope you have a good weekend
Then I heard back from Dr. C******** at GH:
I see Dr. Martins sent you a note about our phone call. We will try t arrange for the biopsy. The test itself takes about two to three weeks to gt an answer.So that is where we stand. Maybe I WILL be able to wear shorts this summer!
If I do not test positive for the ALK therapy, we will next look at radiation and/or cyberknife treatment. But fingers crossed for the ALK.
And I hope all of you have a good weekend as well.