Jun 28, 2012 - 3:54 pm
I just wanted to update you on how Dave and I fared at Hopkins yesterday, and what we have decided. First, we were blown away by the compassion, knowledge and expertise of the doctors and clinicians on this team. They truly are some of the countries' brightest and best, and we feel blessed to literally have them in our backyard.
The day started out with a meeting of 3 other patients and their families besides us, where we met with the nurse practicioner and coordinator of the program. She gave an overview of cancer in general, and lung and esophogeal cancer. We then met with one of the doctors on the team who took a history, did an exam, and answered our questions. We then left for lunch, at which time the "team" comprised of a medical oncologist, radiation oncologsit and surgeon all gethered and discussed each of our cases. We then met with each of them from 1:00 to 4:00 and they suggested a course of treatment.
Specific to Dave it was determined that the endoscopy done the middle of June doesn't quite give them enough comfort to say whether this tumor is at the GE juncture or a little more in the stomach, so it will be repeated on Tuesday. Once they have that data, we will then plunge full steam ahead. Their "gut" feeling, no pun intended! is that it is GE. If it is GE then they will test for a CHFR Methylation status in the cells that they biopsy, and if he has that mutation he will be entered into a clinical trial that Dr. Ronan Kelly at Hopkins is just starting. Ladies, Dr Kelly is adorable! He is from Dublin, has that lovely Irish lilt, and I just fell in love with him! :) Maybe 35, dark black hair.. but I digress! :) But seriously, he is very passionate about EC and is working hard to get more research into it and get the pharmaceutical companies interested, right now they aren't as EC is more of the step child to more prominent cancers like breast, colon, lung.
If the cancer presents more as stomach then he would not have the chemo/radiation combo, but chemo and then surgery, then more chemo. But as I said, they are hopeful for GE and have even gone as far as setting up a time next Friday for the radiation simulation work.
If Dave is a candidate for the clinical trial it would be "A Phase 2 Study of Paclitaxel with Cisplatin vs Fluorpyrimidine with a Platinum Agent for NeoadjuvantTherapy in Operable Esophogeal Cancer Based on CHFR Methylation Status in Diagnostic Biopsies". Whew! I'm sure some of you know what that means, and I'm sure we will soon enough if we participate.
Now the surgery component. I know that many of you (William especially) really advocates for a second opinion. And I think that that is very wise, but we have decided to go with this team, and Dr. Stephen Yang is the head of thoracic surgery at Hopkins. He has done thousands of THE's. We asked about the MIE, he's done a few, but his comfort level is THE. His partner does the MIE, he said he'd be glad to have her consult with us, and we may go that route for a second opinion on how to best operate. He also knows and likes your guy Dr. L at Pittsburgh, William. But for us we feel that Hopkins will deliver superior care and is 25 minutes away. So that is a little up in the air for now, but we want to get going on the chemo and radiation once all the details are in place.
We also know that the long term statistics are still grim, perhaps as low as 30 to 40% for a 5 year survival rate, but as my daughter pointed out, that's 30 or 40 people out of 100 who are still living 5 years out. We'll take that. Heck we are trying to just take it one day at a time for now.
That's all I can think of at the moment. I just wanted to share how things are progressing, and to thank you all for your support. I hope that some of what I have written will help someone else.