Proton Therapy Side Effects?

[IronworkersDaughter]

So, my 25 year old daughter was diagnosed with an anaplastic (grade 3) astrocytoma. She had a surgical resection near the end of November and is currently in her third week of Proton Therapy and chemo with Temodar. Her tumor was in the right temporal lobe and the remaining tumor they couldn't remove (about 10 percent they said) is on her right insula.  Hoping to chat with other people in the same boat as her. What if any side effects did you incur on Proton therapy? Did everyone who had proton therapy to their brain have to be on a steroid? Did anyone NOT lose hair. Please share your experiences. Thank you so much.

[rumpled]

It may help to cut the hair short or shorter to reduce the stress on the hair... but that may be traumatic on her.

Keep us posted and hope all goes well!

[IronworkersDaughter]

Thanks for your response. My daughter is 3 weeks into radiation/Temodar and so far they have not prescribed any steroids. She is beginning to lose some hair the last couple days but it isn't like they described. They told her it would be patches in the area she is being treated but thus far, it is random strands and with long hair hard to know where it is exactly coming from.  

[rumpled]

It is typical for any therapy to be on a steroid as it to reduce swelling. There are side effects of the steroids all by themselves (for instance, my cousin had to have both hips replaced).

I have not had radiation (yet) so only know from research and from family. Proton beam is supposed to be the most sparring of healthy tissue. Still, there are going to be side effects during treatment.

As far as I know, everyone who has been treated, no matter the location, has lost hair which is a major bummer!