Whole Brain Radiation
 

hi all, having now heard from Sloan that they do not believe i am a candidate for stereotactic because there at least 5 and probably more small metastases in the brain, my own docs agree that i need whole brain radiation and say i need to do it quickly, as in the next 2 weeks, before they show up in some place that can be dangerous. the reason for the rush is that although my original 3 spots shrank from may to july and to september, in the september MRI these new ones showed up and they think i now need to act quickly because of the sudden change even though all the new spots are under 2mm and most under 1mm. the rest of my body has responded incredibly well to the chemo of Carbo, taxol and herceptin and my onc thinks we need to be equally aggressive with the brain. i would really appreciate hearing from anyone who has had whole brain radiation and what it was like. Just how tired were you and for how long? what are the other problems i should expect.
thanks
Beth

I had 15 treatments WBR. No memory or other side effects. Only a little tired. I do not regret having done it (provided tumors continue to shrink). I did not do decadron, ate protein and drank lots of water.
Mickey

My mom did wbr almost 2 years ago. She was on decadron immediately. We found out she had brain mets due to her becoming extremely fatigued and just wanted to sleep all the time, and if you knew my mom, who never sleeps, you know something is wrong!!! She did the full amount of WBR and didn't have any problems during, she got much more alert and although alittle wipped out from the radiation, much better from before. I will say her short term memory has been affected along with math skills. She does have trouble balancing a check book, but she still can do it, just not as quickly. Her immediate short term memory has been compromised but we've noticed that if you get her on the subject for awhile, it starts to come back to her. My mom was 58 when she had WBR, I've heard age can increase these types of side effects. She had to have the WBR, and does not regret it, because she is here doing well, and her quality of life just keeps getting better, she just had her first grandchild, Zachary Travis!!!!!!
Take care!!! Kristin

Beth,

Many here have had WBR. I had 21 days and did fine until the last week. Then I experienced extreme fatigue. The process itself is a breeze. Lasting results have been hair loss very slow to grow back and "ditzy brain." Definite memory loss, inability to grasp words and horrible typing skills. I'm 47.

I, too, had many little mets. Your doc is right to start NOW, before the possibility of one creeping down your spine.

Don't know if you're aware, but the her2support.org's co-founder, Christine, went through brain treatments several years ago and she's still alive and kicking!

Keep us posted.

Love and light,

Lisa

Wbr
 

thank you all for the replies. my doc says the negative long term side effects are very rare given my age-44. but the saga continues, turns out the neurologist still thinks SRS is an option, contrary to Sloan, and will take a new "super" scan this week to see if the suspicious mets are really there. i'll keep you posted. Any of you try any supplements/herbs to offset the WBR side-effects, short and long term?

Beth