Wbr

[Julie]

Hi, I'm posting for the benefit of a woman named Susie who has posted on another BC support board and needs help and information badly. She's posting for her sister Donna who's recently been diagnosed with brain mets and needs information and encouragement. I'll copy her post below. The link to the board is:

http://members.boardhost.com/survive/

and the post you'll want to respond to is "jaysdonna" posted by Susie. Thanks to everyone. Donna's a super person.



jaysdonna


Posted by Susie on October 28, 2005, 6:12 pm For those of you who read the Recurrence board, you are familiar with jaysdonna. For those of you who are not, to make a long story short, Donna was diagnosed in May, 2003 with Breast cancer. Since then, the cancer has mets. to her lungs, liver, spine, ribs and a place on her skull. Last week, we found out that it has moved to the brain. She also has another place on her skull, on the right side of her head that is pushing in on her brain causing severe headaches. She has just recently finished 12 rounds of radiation on her back as the pain was so severe. The radiation has taken care of the pain, but now she is totally drained, no energy at all. Onc. put her on new pain meds & also predizone to help with the headaches. She just started a new Chemo this month( her 6th one) that she will take 1x monthly. She started this last Tuesday and they found the mets to the brain & skull last Friday. It was too close to the Chemo for her to do the radiation, so they are going to start that next Tuesday (10 rounds). So.....what I am trying to get at is...she ask me to post on the Recurrence board to see if anyone has had WBR & what the side effects were. I did this and didn't get much response. She is very nervous about this & wants to know what to expect. Is there anyone out there that has done the WBR and if so, what did you experience?...Please let us know.( I am her sister and there are 2 other sisters also). We would apprecicate any and all info that you may have....good or bad....Thank you all so much for taking the time to read this...and hopefully responding. You are all in our prayers....thanks again.

I posted a messg to her over there. Not much help tho'.

pattyz

[Julie]

Thanks!! Of course it helps.

[Heather]

Hi, I have just finished treatment for brain mets yesterday. My tumor was in the back of my head (cerebellum), which they told me was in an easy place to treat. I had 10 rounds of whole brain radiation first. That was not bad at all, other than hair loss (my second time, so it didnt bother me at all this time), and extreme tiredness for about 3 or 4 weeks, then you start to get energy back, bit by bit. Then 4 weeks after the treatments, (yesterday), I had a Stereotactic Radiosurgery Boost. It is a focused, intense treatment specifically to the brain tumor.It isn't surgery, it's radiation. It is an all-day procedure, they put a headframe on your head early in the day, then hook you up to a ct scan machine (they took an MRI the day before), then spend the day planning your path of treatment. They superimpose the 2 images from the ct and mri, and make a three dimensional thing so that they know exactly where to focus the beams (which angles, how much strength, etc, depending on the size and position of the tumor). Many people work on the treatment during the day, and then around mid-afternoon, you get the treatment (with the frame still on). It is very painless. The headframe is a little uncomfortable at first , but you get used to it. Plus they give you drugs to relax you if needed. The hardest part of all of it, was when I got the headframe off. Super headache, but they gave me pills for it, and in half an hour or less, there was no headache. I feel wonderful today. I was really worried about it before hand, as I couldn't imagine someone screwing pins into my head, but it wasnt bad at all. All that fretting for nothing!
Hope this helps.
Heather

[Julie]

Heather thank you so much for your response. I copied your post to the other board.