People ask me how I'm doing and I just don't know how to answer. My scan last week showed no new lesions but small increase in size of everything we previously knew was there. That's the first part of the mud - the radiologist is definitely calling this progression, but if I were on a study it would be called stable disease because it doesn't meet criteria for measurable progression. I have very occasional, mild, easily managed with low doses of Ibuprofen back pain from the lesion in the thoracic spine that started this whole crazy journey. Otherwise, I have no symptoms that I can attribute to the cancer. That's pretty darned good, given that today is eight months since definitive diagnosis. While I was taking Tarceva at 100 mg/day (last dose Wednesday, November 5 at 5 am EST) I had constant, mild nausea. I treat this just like I treated morning sickness - by eating all the time - so I've gained another 5 pounds since I started Tarceva. I also had a manageable rash on my face, neck, chest, back and arms. My energy level was good, certainly better than on chemo. After I saw the scan results last week my oncologist and I agreed that I would take a few days off Tarceva while we decided what to do next. I met with him yesterday and we decided to stay on the Tarceva for another eight weeks. The reason for this is that slow progression is not really a bad thing. I don't have a whole lot of tumor in me for someone with stage IV disease and it really doesn't affect my life too much. It's now clear that I am not going to achieve a complete response or what is termed NED (no evidence of disease). If that doesn't happen with first or second line therapy it's not going to happen. So the treatment objective is disease control. You might ask why we wouldn't shelve the Tarceva given any evidence of disease progression, small as it is. Well, it's not like there are infinite treatment options. Tarceva may be doing its job. We'll know better after another scan (December 29th). But to give it the best possible chance I'm going to try to go back up to 150 mg/day (first dose this morning!). I'm hoping that treating from the get go with Minocycline will help me with the rash and we'll just see if the diarrhea and nausea are a little less awful now that my body has become more familiar with Tarceva. I just really want to make sure we give it every possible chance.
I also went into the oncologist with questions about locally treating the two lesions that have caused me problems and are most likely to do so in the future - the one in my thoracic spine and the one in the middle of the liver. Bottom line - no one will treat the one in the middle of the liver because it is right in the middle of all the major blood vessels in the liver. It's also my only measurable lesion so at least we'll still be able to measure! He doesn't want to radiate the one in the thoracic spine because it's not causing me much trouble (and my friendly spine surgeon looked at it and assures me that I'm not at any risk of structural (fracture) or neurologic compromise as things stand now). Radiation can cause decrease in bone marrow reserve and the oncologist wants me to have as much of that as possible to be able to deal with chemo down the line. So there's that - no spot treatment of any single lesions.
Lastly I asked about adding back the Avastin while I'm on Tarceva. At least anecdotally I've heard about people with slow progression on Tarceva achieving truly stable disease on Tarceva/Avastin. He doesn't want to do that because he seems pretty convinced we'll be back to chemo at some point and he wants to be able to use the Avastin then.
So I have stage IV cancer but it's not kicking my butt too badly. My current treatment may or may not be the very best thing for me. Nobody knows. Clear as mud. But at least I have a plan.
While on my Tarceva break I travelled to New Mexico for an occupational medicine conference. I got in Wednesday evening and stopped by my sister's house for green chile cheese Lotaburgers. Thursday I spent the whole day at the conference and then went to my sister's house for dinner, which was delicious but didn't include any New Mexican fare. We (my sister, her boyfriend, her vet friend who went to UNM undergrad and Colorado State for vet school and I) went to the CSU/UNM volleyball game. CSU is currently ranked #14 in the nation, my brother is an obsessive fan and was worried that they were going to get a challenge from UNM so we went to make him crazy that he couldn't go. We were the only people in CSU regalia besides the CSU team but CSU won so ha! When I got back to the hotel I had fried green chile strips and the best margarita I've ever had in my life for a midnight snack.
Friday I spent the day at the conference and then met friends at Garduno's, where I had carnitas and another margarita. We then stayed up gabbing until the wee hours. One of them has been my friend since age 13!
Saturday I finished the conference and then drove up to Los Alamos to see my BFF (since age 10!). She also has a daughter who is a junior in high school with college athletic aspirations (soccer) so we had fun comparing search notes and college lists.
Sunday morning I drove back down to Albuquerque and had a chile relleno breakfast with my sister before heading to the airport.
My hotel room looked out on the Sandias so every morning I got to see the sun rise over the mountains and the conference ended every day just as they were turning pink. It was just beautiful.
I tried to reach my Albuquerque oncologist friend while I was there to discuss next steps. I wasn't able to reach him. Yesterday I found out why when he called me from the airport in Luxor!
Things I've learned or remembered in the last week:
1) My brother's a nut
2) My heart really is in New Mexico
3) Green chile strips rock!
4) As do premium margaritas!
5) I already know pretty much everything I need to know about occupational medicine to do my job
6) Chile rellenos are good for breakfast
7) Lung cancer sucks
8) Medicine is still more art than science
9) American Airlines can't tell the difference between Hartford and Raleigh-Durham
10) Lung cancer really sucks!
More when we see how I do on the higher (standard) dose of Tarceva.