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September 29, 2008 6:58 AM   Subscribe

What can I expect in terms of side effects for radiation treatment of brain cancer?

Did the biopsy, MRIs, CT scan and chemo. This week I start radiation. It'll be a quick appointment (approx 15 a day for 3 weeks) so I'm not worried about the logistics of that. I would like to know, however, what types of side effects I can expect and ways to treat them.

If there's any correlation to my reaction to chemo, I never threw up but felt really bloated, nauseous, had hot flashes, weird one day side effects (hurt to chew, mouth sores, etc) and that goddamn filmy chemo coating in my mouth (thank you sweet Jesus for gum!!) in addition to the fatigue. Will radiation be more of the same, less of the same or something else entirely?
posted by Atom12 to Health & Fitness (16 answers total)
Response by poster: Missed this on preview: it's 15 minutes a day. Not 15 treatments a day.
posted by Atom12 at 6:59 AM on September 29, 2008

I'm sorry you have to go through this, Atom.

I don't want to scare you, but when my sister had brain radiation last year, she had an immediate adverse reaction: "the worst headache ever" followed by nausea and vomiting. In her words, "the moral of the story is taking drugs is good, 'let's wait and see how you do' is very bad." They gave her a steroid which helped a lot, but which had some bad side effects, including insatiable hunger and an inability to sleep.

It was a rough time for her, but the good news is that the radiation did completely eliminate her tumor -- so it was worth it.

My thoughts are with you. I hope it all goes smoothly.
posted by cider at 7:21 AM on September 29, 2008

I have nothing of value here, but I offer my ditto to ciders post.
Hang tough Atom.
posted by a3matrix at 7:29 AM on September 29, 2008

I do anesthesia for radiation treatments in kids fairly commonly and the side effects I see can vary a good bit depending on the exact course of treatment prescribed. For that reason I would suggest that you talk with the people at the radiation center. In my experience everyone from the physicians on down is more than willing to spend time with the patients and answer questions in great detail; I hope the folks at your place are equally helpful. This American Cancer Society site is good, but is of course a one-size fits all attempt to tell you what to expect.

I also want to add my wishes for it all to go smoothly.
posted by TedW at 7:36 AM on September 29, 2008

Response by poster: Thanks for all the positivity. To be honest, after what I've gone through thus far this seems to be a walk in the park, so I'm not all that scared. That said, the stuff I heard/read/got answers from the staff on in regard to the chemo was a little vague. I would've liked to have found others who've gone through it to get more specific info on little things like sweet, sweet, wonderful gum and the impossibly awesome Edy's fruit bars that made it more bearable. The nurses and doctors have been great, as has the radiation staff.

I don't know how much this matters, but I'm a 38 year old guy in reasonably good health. The tumor has gone from 2.2 cm to .5 cm and is a pineal-something-oma. It's right near the brain stem and is in the center of my brain (hooray!). I'm told it's a rare type most commonly found in kids and Japanese men. I'm neither.
posted by Atom12 at 7:46 AM on September 29, 2008

I just finished a course of radiation treatment for thyroid cancer last week. It's apples and oranges with regards to what your receiving. But I just wanted to let you know that there is light at the end of the tunnel. Today is the first day I'm feeling mostly normal, and I'm doing some work from home, and will probably go back to work in the next couple of days. Good thoughts.
posted by kimdog at 7:57 AM on September 29, 2008

Hopefully, an increase in hugs.
posted by bicyclefish at 7:57 AM on September 29, 2008 [1 favorite]

The NBTF has a page for finding other brain tumor survivors with your same brain tumor. I did a search on "pineal tumors" and there's a 49 year old who was diagnosed in 1995 who has had radiation who is available to talk. There are six people under "Pilocytic Astrocytoma," ages 29 to 58. (I'm not sure which one is you.)

Well, if you've been dealing with this for a while, you may have already exhausted this resource, but just in case.
posted by ClaudiaCenter at 8:34 AM on September 29, 2008 [1 favorite]

No voice-of-experience to offer here, just the observation that if you managed to get through chemo with it sounding like your sense of humor still sharp enough to the point that I'm actually reading this and thinking "damn, I wanna buy this guy a beer and hang out," then you're ahead of the game.

Good luck. And I also found Jolly Ranchers worked well for weird-taste-in-mouth issues.
posted by EmpressCallipygos at 10:04 AM on September 29, 2008

Best answer: My friend tells us of her experiences here. She's also written to our Google group, describing how she feels. I'll mention your question to her.
posted by peagood at 10:41 AM on September 29, 2008

Atom12, I will have good thoughts for you.

Radiation will be tougher than chemo. Make sure you have somebody to keep track of your steroid dosage, because you will be confused after treatments and sure you know what you're supposed to take and when (but you'll likely be wrong). It is IMPERATIVE that you take the steroids correctly.
posted by vito90 at 11:07 AM on September 29, 2008

Response by poster: Aw, man. Not the steroids again. I was secretly hoping that wasn't gonna be part of the equation. I'd rather have another 4 years of King George II than go back on those things and that's saying a lot.

Which brings me to Incredibly Awesome Grocery Item #3: Fiber One cereal. I have become a connoisseur. The bars are great, but for sheer power and fiberosity the traditionalist in me has to hand it to the original formula. The honey clusters version is also quite dependable, which is what I look for in a fiber-based cereal, though it's ultimately the Robin to the original formula's Batman. I am patiently waiting for the inevitable endorsement deal. Once the higher-ups can get past the concept of a grinning Mickey Rooney lookalike crowing their praises the money train will roll in, I just know it.

Thanks for the coolness and positivity everyone.
posted by Atom12 at 11:23 AM on September 29, 2008

Best answer: It's not actually predictable whether you will find radiation therapy more or less trying than chemotherapy. Prior to treatment and your signed consent for treatment, your physician should be discussing with you a list of the side effects. These would include, after a week or two of treatment, fatigue, hair loss (possibly permanent, depending on the radiation dose), reddened and sore skin, headache due to brain swelling and treated with steroids as noted above. But the steroid treatment isn't required in most cases I've seen. There are also side effects that could happen weeks or months later, see links below. The occurrence and intensity of these side effects depend on the radiation dose, the volume of brain and tumor covered by the radiation, the frequency (days per week) at which the radiation is given, as well as your body's inborn tolerance and ability to repair the damage to normal tissue by radiation. Here's a list of symptoms. And a second list. There might be other symptoms such as dry eyes or sore ears depending on where the radiation beams enter and exit.

These symptoms are for the most part very manageable and temporary, although some, like hair loss and fatigue/sleepiness/memory problems can be long lasting. Be sure to discuss these with your doctor beforehand, and if/when symptoms appear, tell them to the therapists running the machine for your daily treatments. They've seen it before and are the best way to reach your prescribing physician quickly.

Best wishes for an uneventful treatment and recovery!
posted by bbranden1 at 12:03 PM on September 29, 2008

Best answer: From what I have seen radiation to the head is far easier on you than chemo. Some hair loss, and possible swelling that can be treated with steroids. You will be limited as to what grooming products you can use on the areas radiation will be passing through, so plan a shopping trip. It is common to get dry skin, and only certain lotions can be used, go ahead and find out what you need and buy the right product, even if you ¨never use¨ that stuff, so you aren´t wanting it in the middle of the night.

The radiation will be applied in an arc (focused on the tumor), and you should not have any problems with your mouth unless they need to send radiation through that area.

Hair loss will be uneven. Shaving your head might make it look funny. You will need to wear a hat in any case (to protect your skin).

You might have something over your head to position you during treatments.

The American Brain Tumor Association website may have more info for you.
posted by yohko at 12:44 PM on September 29, 2008

If your just looking for anecdotal info, I can say that you might want to get a brush cut so that you have less hair to pick up and there's a possibility that you'll get a really itchy (sun)burn on the scalp.

Another aspect of treatment might be that you'll get wiped out by visitors and might need to schedule time with family or friends in such a way as it gives you a couple days of recovery time.

Good luck and pamper yourself whenever you can.
posted by bonobothegreat at 1:47 PM on September 29, 2008

Response by poster: Last treatment was 11/19 and for those going through something similar, the only side effect I've had is tiredness, really. It wasn't nearly as bad as chemo. Not even close.

Thanks for the tips everyone!
posted by Atom12 at 1:38 PM on December 5, 2008

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