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Treatment Phase One

Last week I was fitted out for a radiation mask, which is actually more of a guide than a mask. There was a plastic mesh that they dipped in hot water to soften it, then shape it around my face, while my head was being held in a certain position and a CT scan was performed. Markers were put on the "mask" while the scan was made. The idea, as far as I understand it, was to make sure they had my head aligned in a way that allows them to aim the radiation right at the spot where the tumor used to be (and the likeliest place for it to return) while avoiding as much healthy tissue as possible. The mask will allow them to put my head back into the exact same position every time I receive a dose of radiation. All that starts next Monday, which will actually be a trial run to affirm that they have everything aligned correctly. Application of radiation begins on Tuesday, and will happen five days a week for six weeks, ending in late February.

There's a choice these days between photon and proton radiation. Photon is the older, more established technology, and it's apparently very similar to X-ray radiation. Proton has been much harder to get until recently, because it requires a cyclotron. Seattle (specifically Northwest Hospital) just got one of the machines within the last year or two. My radiation oncologist, Dr Halasz, has mostly used photon, and she said there's no clinical evidence yet of an advantage between the two technologies. All the evidence is about the older, more established technology, not surprisingly. The theoretical advantage of proton is that it leaves its dose of radiation only in the place where it stops, whereas photon leaves a dose going in and another dose coming out. So theoretically proton would do less damage to healthy tissue surrounding the target area. But the oncologists emphasized the lack of data about proton, and Northwest Hospital is not as close to me as UW Medical Center, where my oncologists are, so I chose to go with photon.

Simultaneously with the radiation, but seven days a week instead of five, I'll be taking a chemo drug called Temodar, which is the brand name of Temozolomide. This is taken orally, not intravenously. One of the good pieces of news I've received since the horrible news came down is that my MGMT gene is methylated. What this means in practical terms is that my body won't try to prevent the Temodar from killing cancer cells. Apparently unmethylated people have an enzyme that repairs the cancer cells the chemo is trying to destroy. The oncology nurse told me this gives me only a slight advantage over unmethylated folks, probably only months, not years, increase in the statistical probabilities of survival. Still, I'll take the edge, given the option. With any luck, it will also mean that my experience of the chemo will be less horrible. On the other hand, a lot of people have insisted that Temodar is, indeed, better tolerated than other forms of chemo, in terms of side effects. Fingers crossed!

So after six weeks of this combined treatment, I'll take four weeks off to allow my immune system to recover from the abuse. Then I'll be taking the chemo again, but only five days a month, for the rest of the year. There will also be an MRI after ten weeks of treatment/recovery, to see if the tumor has returned. If it has, it could be that treatment would change too. The Optune -- that electromagnetic device that attempts to interfere with cancer cell mitosis -- is apparently only used if the tumor returns. But one thing at a time. I just hope I survive the first phase without some of the worst side effects that are possible. I'll spare you the details on those, but I hope to keep you updated on how I'm handling the treatment as I go through it.



( 12 comments — Leave a comment )
Jan. 9th, 2016 08:10 pm (UTC)
I am so sorry you have to go through this. I really am. Your sharing about it - even the gory details, however, is thoughtful and educational. I am in the middle of the book you mentioned several entries ago - Being Mortal and I'm captivated by it. Thank you. I hope you will continue to share your experiences.

And, I offer. I am in Seattle. If there is anything I can do to lighten your load or help you out, I hope you will ask.

Susan Dennis
206 467 9912

Jan. 9th, 2016 10:27 pm (UTC)
Thanks, Susan. Sorry if I'm being forgetful, but have we met? No problem if not. As for help, right now I have more caregivers than I know what to do with! Every day I'm reminded how fortunate I am to have so many caring people in my life. I'm really not sure how that happened; it just kind of snuck up on me. Glad you're enjoying the Gawande book, which truly is an amazing work.

Edited at 2016-01-09 10:30 pm (UTC)
Jan. 9th, 2016 10:42 pm (UTC)
No worries and no, we have not met. I'm not even sure if we have any mutual friends nor how or when I found you on LJ! Mysteries!!!

Glad to hear you are covered, care and otherwise.
Jan. 9th, 2016 11:09 pm (UTC)
The internet does really (if only occasionally) manage to bring strangers together, which is a cool thing. I've gotten to know people in real life through LiveJournal, but not many.
Jan. 9th, 2016 08:40 pm (UTC)
Thanks for sharing your progress and glad about the news re your Temodar tolerance. As for chemo side effects, at least you will be spared the trauma that many other people experience when their hair thins/falls out :->
Jan. 9th, 2016 10:28 pm (UTC)
Too true, although I was told that the radiation in particular might make what's left a little patchier. I was interested to hear that it wouldn't affect my facial or body hair, which seems a little strange to me. They did say that it affects fast-growing cells, like cancer or hair. Maybe facial and body hair isn't quite as fast-growing as head hair.
Jan. 9th, 2016 08:55 pm (UTC)
Oh yes, the radiation mask. I remember that from when my mother had a tumor treated (successfully). She found the fitting a difficult process. It reads from this as if you did not, so that's one small plus.

Radiation treatment can require you to lie perfectly still alone in the machine for quite a while. At Stanford, where my mother's was done, they had a CD player to help pass the time, and she sometimes brought her own. You might want to ask about what they have on such lines.

Jan. 9th, 2016 10:30 pm (UTC)
The fitting was mildly uncomfortable, but not extremely so. I'm under the impression that the actual application of radiation will take less than ten minutes, although it will be longer than that with all the set up. They offered me music for the MRI; maybe I'll be able to listen to stuff during radiation too.

Edited at 2016-01-09 10:30 pm (UTC)
Jan. 10th, 2016 06:07 pm (UTC)
Thinking of you, Randy, and hoping for the best.
Jan. 10th, 2016 09:06 pm (UTC)
Jan. 10th, 2016 08:49 pm (UTC)
Best of luck with it all.
Jan. 10th, 2016 09:06 pm (UTC)
Thank you.
( 12 comments — Leave a comment )

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