Robert and I went to see the oncologist this morning to figure out where we go next. The oncologist spent last week going over scans with radiologists and talking to the Sloan Kettering thoracic oncologist while Robert and I were in Alaska. We all agree that the scan after the 8th cycle of Carboplatin/Taxol/Avastin shows stable disease when compared to the one done after the 6th cycle. Choices going forward include continuing the Carbo/Taxol/Avastin (nobody's leaning in this direction - I've already had 2 more cycles than customary, the neuropathy was getting a little worse with each cycle and all the oncologists we've talked to on go on for more than 6 cycles with continued clear evidence of response, meaning tumor shrinkage and not just stable disease), continuing Avastin as a single agent, continuing Avastin and adding Tarceva, stopping everything and waiting until clear evidence of progression to add Tarceva or switching to Tarceva as single agent second line therapy now. My oncologist doesn't want to continue the Avastin to progression because he'd like to be able to use it again in the future if necessary and none of us want to stop everything right now. Probably the biggest change in lung cancer in the last year has been the move to go directly from first line treatment to second line treatment without waiting for evidence of progression. The reason for this is that you lose the opportunity to use second line treatment on about 1/3 of patients because they get too sick while waiting for evidence of progression to tolerate second line treatment. So my oncologist wants to try Tarceva "on a short leash," meaning frequent CT scans and even more frequent liver function tests to make sure everything isn't going to pot. He's worried that I may not respond to the Tarceva because my tumor is negative for the gene mutation that is supposed to be associated with good response. My reading of the literature is that there really isn't that good an association between the mutation and response. I may not see tumor shrinkage, but I'm hoping that the Tarceva will keep things stable where they are. There is one recent study of long term (>4 years) responders to the class of drug that includes Tarceva and most of those long term survivors do not have the genetic mutation.
I've read everything that I can find about Tarceva and plan to do everything that I can to have the best chance of a good result. I stopped Protonix last week and, lo and behold, without chemotherapy to eat up the lining of my gastrointestinal tract, no heartburn! Tarceva is dependent on an acid environment for optimal absorption so proton pump inhibitors like Protonix are contraindicated. I will set an alarm for 5 am every day to take the medication. You are supposed to take it at the same time every day and wait for at least an hour to eat or take other medications. I'll keep it at the bedside so I shouldn't have to really wake up to take it. A rash which looks like but isn't acne involving the face and scalp is common and strongly associated with tumor response. That kind of sucks but I'm accustomed to looking a little weird by now. At least I should get my eyebrows and eyelashes back!. Last but not least I'm armed with Immodium and Lomotil, as fairly bad diarrhea is the other common side effect of Tarceva.
So enough about cancer. On with the trip report!
Robert and I flew nonstop from JFK to Vancouver, BC on Sunday, August 31. We took the Norwegian Cruise Line transfer to our ship, the Norwegian Sun, at Canada Place. This was a first cruise for both of us and we were pretty blown away by the ship. We had lunch in the Seven Seas restaurant
and then went to our stateroom to unpack. We pulled away from Vancouver at about 5:30 pm. The view was spectacular -
the weather was gorgeous on Sunday after a week of pretty constant rain. We had dinner and checked out the on board casino.
Monday morning we had breakfast in the Seven Seas restaurant and agreed to share a table. We were lucky enough to meet Zel and George, Canadians who have done this cruise before and happily responded to Robert's inquiry about playing bridge. We shared much of the remainder of the cruise with them playing bridge, gambling at the casino, riding the train in Skagway and eating in the restaurants. They gave us great pointers about cruising, improved our bridge game as much as is possible in a week with such miserable starting material and convinced us to play Three Card Poker rather than slots and Let It Ride. My two straight flushes and three deuces helped us stretch our gambling stake for the entire week. They didn't do too badly, either!
Tuesday we docked in Ketchikan.
We got out and walked around the town (Sorry, Sam, this is the closest I got to getting a picture of a moose for you).
There is a salmon hatchery in town and we were lucky enough to be there during the salmon run so we got to watch those wacky salmon throwing themselves at the rapids to get upstream.
Wednesday we docked in Juneau and we took a bus to the Mendenhall Glacier.
Wow. I've never seen a glacier before and it was just stunning.
We tried to miss the bus because I made Robert take a little 3/4 mile hike. We were 2 minutes late getting back to the bus but the driver didn't leave without us. Many stink eyes were sent our way by the other passengers, though.
Wednesday afternoon the captain took the ship up Tracy Arm toward Sawyer's Glacier.
There was so much ice in the water that he couldn't get much closer than about three miles from the glacier but, again, it was spectacular. We had a balcony stateroom and I was smart enough to bring my quilt so I could sit out on the balcony to enjoy the scenery.
Thursday we docked in Skagway and took the narrow gauge railroad up almost 3000 feet to the US/Canadian border. We saw remnants of the trail that the gold stampeders took to get to the Yukon and, again, the scenery was spectacular.
Friday was clear sailing. We went to a virtual behind the scenes tour of the ship, which was pretty amazing. Thrusters, stabilizers, rudders, engines - the sheer enormity of running the ship and provisioning for 2200 passengers was amazing! Saturday we went through the Inside Passage again and docked in Vancouver at about 7 am on Sunday. We had an uneventful trip to the airport and through customs and got into JFK at about 11:45 pm Sunday night, exhausted but as happy as we could possibly be with our trip.
I was at work bright and early yesterday morning, Hannah's first volleyball game of the high school season is tonight and our friends Philip and Irene arrive from Oregon on Friday. The Free to Breathe Walk in Glastonbury is Sunday, September 21st. If you haven't had to opportunity to visit my fundraising page for the walk, please do and consider sponsoring me. Just about the only thing any of us can do to give me and everyone else with lung cancer better chances than the dismal ones we have right now is spur research. That's what this walk is for, so we're going for it. Please send the link on to anyone you think might be interested in contributing.
So that's where things stand in the Doc's world today. I feel spectacular - my energy level is pretty much normal, my toes are just a little tingly, I only gained 5 pounds on the cruise and Tarceva is covered by my prescription plan. What else could I possibly hope for?!
Lisa
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