On Friday, I had an appointment with Dr. Brian Lee at Swedish Cancer Institute. Dr. Lee (my medical oncologist is also Dr. Lee, so I'm calling the second Dr. Lee "CyberKnife Guy") spent an hour with me, explaining my tumor and how he would treat it, laying out all the potential side effects, and answering my questions with admirable thoroughness.
By the end of the hour my brain was stuffed with new information, but I was also convinced that I had found the right doctor to beam radiation at my brain--and I was convinced that cyberknife was a better treatment choice than gamma knife. (I already knew that I didn't want conventional radiation, because of the chances of it harming my brain and also my mouth and salivary glands--people who have radiation to the mouth area often find themselves with a dry mouth, which leads to the loss of their teeth--let's not even go there.)
With cyberknife, I will have between three and five treatments, rather than just one gamma knife treatment. Having the radiation dose broken up over several treatments improves the odds that the nerves to my tongue will survive the zapping, because this tumor is wrapped around this very important nerve.
Another advantage is that I won't need to have a metal frame bolted to my head in four places. Several readers who have had gamma knife treatment wrote to tell me that this was really uncomfortable and unpleasant, and one friend of mine said she still has scars on her temples. With cyberknife, I will have a plastic mold made of my face.
When CyberKnife Guy told me about this, I was afraid that I would have problems with it because I'm claustrophobic, but they do cut eye holes in the mask, so I think I will be fine.
The next step--once we have insurance approval--is for me to go in for a planning MRI and CT. CyberKnife Guy needs better info about my tumor to plan the treatment.
The treatment itself will probably start about a month from now, and each session will last between 30 and 45 minutes, during which time my tumor will be zapped about 100 times, from that many different angles.
The most likely side effect is swelling at the area being radiated, and because this swelling could damage the nerve we are trying to protect, Dr. Lee said he would give me decadron to take every day while I'm in treatment. If there is damage to the nerve, it may not show up for six to 12 months.
There are some other rare side effects, but I'm not too worried about these. My skin might get red because of the radiation, and it's possible that fat or muscle tissue could be killed by the radiation. There is also a tiny risk of cataracts if the beam shines into my eyes.
Oh, and there is a very slight chance (1 to 2 percent lifetime risk) that the radiation will cause a new cancer in my brain. Considering that I already have a one centimeter tumor buried two inches deep inside my skull, I'm willing to take this risk.
CyberKnife Guy also said I should wait to start the neratinib--assuming Wyeth/Pfizer gives it to me on compassionate use--until after I've finished the radiation. He said there is no data on doing radiation on patients who are taking neratinib--not surprising, since the drug is so new. Still not available outside of clinical trials.
Meanwhile, I have no problems with my tongue right now--because I was treated with steroids when I was hospitalized--so I'll just wait for my treatment to be scheduled. I am a little bit concerned that the holidays are so close, but I shouldn't have any side effects from this, so the only thing that should impact my life is having to go in every day for three to five days in a row.
Seattle weather update: It is dark, cold, and raining like crazy. Connie is waiting and waiting for his walk. I'm hoping the rain will at last slack off in the next hour so we can go out.
@ Jeanne Sather 2009.
This is the first time i visit your blog. You are so brave and so strong to face with your condition. This is a good act rather than just sitting there and blaming the fate. Good luck to you!
Posted by: Kok Siong Chen | November 23, 2009 at 04:46 PM
Jeanne, I wish you luck and courage....
Posted by: Miranda | November 25, 2009 at 02:32 AM