Wednesday, October 24, 2012

(A Bit) Better news

Among instruments, waiting for Dr. N. to appear.
Photo by Padmatara.
Definitely went beyond the three-things-a-day rule today. Chapter meeting, met with Dr. Nelson for about 40 minutes with Padmatara and Danamaya, who then dropped me off at Misha's. Talked to her a bit and got a treatment, had a skype meeting, and another skype call with Cull and Laura, who is visiting Singapore at the moment.

It was great talking to Dr. Nelson. I was figuring she'd want to dose me up on chemotherapy as soon as possible, maybe in December. That's what my bad case scenarios were all about. Fact is, she has no idea what kind of chemotherapy to give me, I don't have any actual cancer symptoms yet, and anyway she knows the importance of breaks. She says that no one knows or has anything definite on what will work for my type of cancer.

As I have been told since Day 1, I have a very rare type of cancer, about which data is scarce.* My treatments so far have been based on similar gynecological cancers - uterine, ovarian, or cervical - which are also adenocarcinomas (same cell type). She explained to me how the chemotherapy Carbotaxol I just got made sense for me, something about "platinum sensitive" gyn cancers. It brought home to me just how much of an educated guessing game all this is for the oncologists. She also said that, at the time of my original treatment back in January, I probably already had micro metastases in my lungs.

She's going to take the time I'm in Mexico to figure something out. I could barely understand what she was saying about that. Something about doing various tests on the original tissue from the biopsy, looking for 'markers'... Padmatara recorded most of the convo which was very handy in writing this, but I am too tired right now to listen to the specifics about the kind of research she will do. Listening to the recording again really helps in general though. Oncologists seem to talk fast. However Danamaya commented about what a good doctor and communicator she is, so I am glad I switched from Tavakoli who (though he was amusing) seemed to base my treatment entirely on studies, which are very general and seem to involve constant drugs.

As to the condition of my lungs: while the nodules have grown and there are more of them, they are all still very small and seem to be growing slowly. There are 3-4 nodules that are very small, and 3-4 that are easy to see. The 8-10 nodules I talked about before were I think Dr. Littel's guess; the scan reports, which are written by other doctors (radiologists), never gave a total detected number. Presumably before the current development there were 4-6 nodules total, and now there are 6-8.

She showed me these two CT scans - a cross section, looking up as it were from my feet. The left scan is from May, and right is from a week or so ago (mid-October.) As you can see, in five or six months the width of a nodule in my left lung grew about 3.1 mm, or 1/10 of an inch. This is one of the bigger ones. Dr. Nelson said, "There is a huge amount of normal lung."

So this is a slow-growing cancer. (Misha says slow growing cancers are more resistant to chemotherapy. Need to ask about that.) What is a fast-growing cancer? The size of a small-cell lung cancer tumor could double in two weeks.

I had thought that it wouldn't be possible for me to get radiation again, but apparently that depends on the body part. For the lungs it would be fine, though she spoke of it in terms of "symptom control" rather than survival. If one nodule, for example, started growing more quickly and causing symptoms. Symptoms to look out for: shortness of breath, a cough, fatigue, or weight loss. I remember a main complaint back in November of last year, when I first was moved to go to a doctor, was fatigue.

I will get an x-ray in early December. (Apparently x-rays expose you to 1/1000 the radiation of a CT scan.) What about travel? Depends on how I feel. She suggested getting a flight to Sing. with a flexible return date in case symptoms start appearing.

She will be looking for clinical trials for new drugs, and suggested I look around as well (for example, at, and NCI), which I am motivated to do. Kaiser will cover costs of participating in U.S. based Phase 2 trials. (Phase 1 just determines dosage.) She suggested choosing a location near a support system. My initial search showed that most questionnaires require one to choose the cancer type, and my cancer type is not one of the options.

More tomorrow. Tired.

Listening to my talk a few days ago completely changed my attitude! I still don't know what's going to happen. I can still enjoy my life...A friend wrote this morning, "I just listened to your talk; fucking unbelievable - you are unbelievable. So great and I think I never heard anyone talking about it like that. So inspirational. Thank you." Cool!

* I still have a rare gynecological cancer even though it's now in my lungs. That's how it works when a primary cancer metastasizes. For example, a lady in the last support group I went to had breast cancer that  metastasizes into her colon. So she does not have colon cancer; she has metastatic breast cancer in her colon. It's important because they have to focus on and treat the original cell type. After metastases, location is a secondary concern. 

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