› Forums › General Melanoma Community › Radiation – side effects and proton vs photon
- This topic has 7 replies, 4 voices, and was last updated 7 years, 1 month ago by
guynamedbilly.
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- November 24, 2018 at 1:50 pm
Hi all. My doc is recommending radiation from the top of my head down my neck to where my positive lymph nodes were.
Has anyone had experience with radiation that they can share? What if any side effects did you encounter?
I’m reaearching proton vs. photon. I can only get photon where I live. Still I’m willing to travel to get the proton radiation if the side effects are quite a bit less. And if my insurance covers it. Alternatively there are some clinical trials right now using proton.
Any thoughts on this?
Hope everyone is greatly enjoying their Thanksgiving weekend!
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- November 25, 2018 at 5:25 pm
Hi Sing123, im Mike nice to meet you, i cant really be of help in this "catagory" of Melanoma Warfare for im a "bit" more aware of Immunal Therapy {thats where im at presently} but, im sure someone will chime in shortly! i do know most of the Radio, Photon & Proton etc. can cause loss of hair, mild to severe nausea {vomiting} can cause headaches etc, blistering of skin..and i hear its an "outpatient" deal!…be patient though, someone here may have experiance about it…
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- November 26, 2018 at 1:13 pm
I am not aware of the specific proton vs photon details however I would get a second opinion. If you have up to 18 spots (smaller than 2.5 cm) in the brain, radiation oncologist would do it using a gamma knife. The neurosurgeon said that once the spots are greater than 2.5 cm, standard treatment protocol calls for surgery plus radiation. Radiation of the entire brain is used only as a last resort.
The following web site may be useful
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- November 26, 2018 at 3:42 pm
Thanks very much, Mike. And for the link to the article. I am meeting with my radiation guy tomorrow and getting a second opinion, either from Mayo or UF Shands in Jax. Head and neck radiation seems to carry some significant complications, such as potential hearing loss, loss of taste, difficulty swallowing and teeth decay. Proton is supposed to minimize side effects.
I read about your journey and what awesome news that the Opdivo is working on those tumors! Appreciate your positive outlook and humor. Humor is a great go to.
Best to you and to all of you,
Cindy
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- November 27, 2018 at 3:53 pm
I finished up radiation on the back of my scalp about a month and a half ago. It covered the entire back of my scalp from the crown to just behind my left ear to just in front of my right ear, and down my neck, so sounds close to what they are recommending to you. I had 20 sessions.
The actual treatment was very uncomfortable for me because they didn't really have a great way to hold my head while laying on my stomach. Maybe other places would have a better way to deal with that. The treatments weren't painful or anything, but after the first two weeks I had a constant bitter taste in my mouth and smelled metal often. It was thought that it was a side effect of the radiation reacting with two metal fillings in my teeth. After the third week I lost my taste of salt. This lasted for nearly a month before my taste and smell returned to normal. Gotta admit the bad taste was for sure the worst part, so maybe you wouldn't even experience that if you don't have fillings.
After the second week, my scalp was very sensitive, but not painful.
After the third week, my hair fell out. It won't grow back. I started putting on Desitin for the skin irritation at this point.
About one and a half weeks after the last treatment, my skin turned bright red. A few days later it started peeling, and a few days after that, it started scabbing over.
Now, around a month and a half after ending treatment, my taste and smell are back to normal. My scalp does not hurt at all, though it does itch a little. It's still reddish, but not like the lobster color it was earlier. I haven't quite figured out what hairstyle to go with yet. I'm currently rocking a Mohawk. 🙂
Good luck
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- November 27, 2018 at 3:57 pm
I'll add that I was generally tired after about the second week of treatments to about a week after the last treatment. The radiation is doing a lot of damage that your body needs time to recover from.
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- November 29, 2018 at 7:58 pm
Thanks so much for sharing your experience and I am glad to hear that your sense of taste is back!
Did you have difficulty swallowing? The doc is giving me lidocaine supposedly to help with that.
And he told me to do neck exercises to help with scarring/stiffness. Was this an issue for you?
My rad style sounds like it will be a reverse mohawk Lol
Best ,
Cindy
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- November 30, 2018 at 12:01 am
No I didn't have trouble swallowing, but I did get a sore throat that lasted about two days. I got their lidocaine cocktail too, but only used it twice. I had more mucous drainage, but not that bad.
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