Thursday, October 25, 2012

Dr. Nelson meeting Part 2, Misha, Carol, CyberKnife

If you're not interested in every little detail, you might want to skip this post.

Confession: took this photo while driving...
A little more about the meeting with Dr. Nelson. As did Dr. Tavakoli, she seemed to panic a bit when she saw I had two pals with me. I think they expect to be detained by random inane questions. The first thing she said was that she had spent quite a lot of time with me before but this time she only had twenty minutes, she had a meeting to go to, but then she stayed for forty. Why don't doctors just know that my friends are cool?

Dr. Nelson mentioned, in passing, "CyberKnife" treatment. (SO glad for the recording, would not have remembered it!) It's super precise radiation (and seems to be offered by Kaiser, at Oyster Point). According to the CyberKnife website:
The CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide...It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.
I am starting to look for clinical trials. Most of them seem to be for chemos, which I am not at all enthused about. At this point radiation (CyberKnife) seems much more promising, since radiation worked so well already, and chemo, for me, is such a crap shoot. I'm going to see what people say about Cyberknife on the online cancer forums.

Dr. N. also mentioned: CPT-11, HER2 (Human Epidermal Growth Factor Receptor 2), and heregulin. I think these are more about researching what chemos might work with my condition ('markers'?)

Misha & Juice fasting:
I told Misha I'd gotten discouraged and wasn't taking the herbs as much. She said the herbs might be the reason the nodules are growing slowly.
I asked her what she thought about me doing a juice fast. She said for 90% of her patients she would say no, but for me she thinks it'd be all right. (It's because my condition according to Traditional Chinese Medicine involves 'excess' and 'heat' whereas most people are 'deficient' and 'cold'. Raw vegetables are cold.) The juice fast retreat place, in LA, doesn't have any room until late January.

She suggested I consider consulting with Keith Block at his Center for Integrative Medicine near Chicago. Not psyched about that just because it will be very expensive and don't feel confident that it would help. At least from the Western medical point of view it's treatment for my specific cancer that is the mystery and presumably he doesn't know any more about that than my oncologist does. He might know some general things that could be helpful. Just not sure I need to go to Chicago for that. Anyway Misha said she's going to think about some options and email them to me.

Carol G. - Palliative Care:
It was a very good meeting today, very interesting. However, I don't have the energy to write it all up. I will say that she described the 'marker' mystery as genetic markers that can suggest or predict someone's response to a particular chemotherapy. (That it won't work at all, or which ones might be better for a particular person.)

Online forums:
...Though it was not my plan, I've been reading online forums for hours. I picked up more of the 411 about scans: CT scans do 1 mm slices, whereas PET/CT scans do 5 mm slices. Almost everything folks who had experienced CyberKnife had to say about it was positive. One woman mentioned there were 'the usual' side effects but she didn't say what they were. One guy said the only side effect he had was fatigue, for example taking a three hour nap afterwards, that it is a breeze compared to chemotherapy. Many people live in places they can't get it, and apparently some insurance won't pay for it. There was some detailed info on how to force your insurance company to pay for it. They implant gold thingies that help the machine with navigation. Then the radiation gets delivered from all these different angles, I think that's why surrounding tissue isn't damaged. Sounds like the usual program is daily for 5 days in a row. When radiation is being delivered to lungs, the beam locks onto the tumor and moves with your breathing. Cool. You can see patient testimonies on youtube. Seems too good to be true...

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