brain mets

mom has bc w mets to brain and liver. had wbr in sept of 03. still on 4mg of decadron daily. the last few days she says every now and then she will get a headace that just lasts a few minutes, and it feels kind of like electric shocks? anyone ever experienced this b4?

To whom it may concern.
It is common to have not only fatique, but also ear crackling noise, ringing , and headache for a breif moment. This can happen over a period of approx. a year or more depending on the size of tumors. It sounds like mom has alot of edema or water around the tumor areas. Takinking the steroid usually helps for a while...But when it's time to check her progress this steroid may be weened off very SLOWLY. Ask the Rad Onc. Let me know when you get resuts from the next MRI. tHIS RADIATION THERAPY WORKS OVER TIME. PATIENCE IS THE KEY...SOMETIME 6MOS TO A YEAR. mOM WILL BE WATCHED OVER TIME. BE BRAVE. HUGS Christine

my mom has bc with mets to brain and liver. we will get results from latest scans on monday. of the liver. but the last few days she has been having headaces n hte back of hte head - where we know there was a tumor - and alos headace above one eye - where there was no tumor. she had wbr in september of 03. i am so scared . they havent done any more scans of the head since the wbr. cam gamma knife or cyber knife work on multitple brain mets and if she still has mets n other places? i am terrified that they may be a new grwoth n the rbain. please give me something encouraging,

I have had three Stereotactic Radiosurgeries treating a total of 10 brain mets. Never had WBR as I did not/do not like the odds.

As I still have atleast 4 tumors left, I am in the final waiting period to have a CyberKnife procedure in the next week or so.

This will be my FOURTH such similar procedure. They have all been 100% successful in the tumors treated. I have had these multiple brain mets... and this is the way I chose for myself to be treated.

I am also on Temodar, hoping it will do some stable type of response for me.

In the future, I would try Xeloda in combination, as it has shown, in several small trials, to have effect on brain mets from breast cancer.

Accuray.com has a link to the CyberKnife centers across the country. There are not many...13-17 depending on what news release I have read.

The SRS I had are similar to the GK as it uses a screwed on headframe.

Hope this is what you were looking for in the way of encouragement.

hugs to you and your mom,
pattyz

can u have the gamma knife or other things besides wbr even if u have multiple brain mets and have had already wbr? and what if you are on chemo now for other mets?

Dear All
my sister is 39yrs old with advanced bc with mets to lung/skull and now 4 spots on brain, just finished wbr demanded referral to neurologist for possibility of gamma/cyber knife. Here in UK wbr is only treatment offered and we envisage an argument for this treatment we need to go armed with asmuch info as possible. We would appreciate your help and has anybody been refused this treatment and for what reasons? After reading your inspirational messages we know we will get more time than wbr can offer us
thanks Pat G

My mother was doing so well on taxol/carbo/herceptin for liver mets. She had one cycle left and her tumors were shrinking away. 2 weeks ago she started acting weird,almost like someone with Alzheimers and now we know she has brain mets. She is undergoing radiation(14 treatments).I would like to hear any words of encouragement. She has had 3 treatments and I see no difference. Should I? Is this the end for her? I feel so helpless!!

Did I answer you as another name on another site?

Love and light,

Lisa

Lisa,yes thank you. I think you directed me here.Bless you.

Hopefully Colleen, your mother will be continuing with the herceptin during the radiation. Studies have shown radiation and Herceptin work well together. It may also seep thru the blood-brain barrier during and possibly after, if the barrier leaks from the edema. Another thing about brain radiation therapy is that it works over time to see results. It is helpful to eat well to sustain her energy level. She may be given decadron, a steroid that helps to overcome the side effects for a short period of time. You must have a little more patients to see any improvements. Her next MRI should show some shrinkage. Whole brain radiation can be working to resove these mets for up to 9 mos. or more.
There are many factors you need to discuss with the Onc. Ask about her Karnofsky score at time of Dx. A score of 70 or more is good and patients seem to do better with radiation than others with lower. It basically looks at the patients overall health and performance, walking, talking,etc. Time will put a better picture on her prognosis. Most tumors smaller than 2 cm do well, and in time the MRi will be done periodically to follow-up on her progress. You are definitely a very caring daughter, and understand completely your compassionate feelings to want to see more progress sooner. Keep us informed. Read also our brain tumor page and my personal story.
Hugs to you and mom, Christine

My Mom will be having herceptin during the treatment. I had no idea that the radiation kept working after the actual treatments were done. This is why I come to these boards,to get info.
Its alright that she isn't showing progress immediatley,as long as I know that is normal. I just didn't know if she was supposed to. Thank you all so much.

hi all,
got the call today I have two brain mets. One is 1.5 cm. and the other is smaller. I have my apt with the radiation oncologist. My regular onc said we may be looking at a combination of gamma and whole brain?? But I will not have exact info until I see rads doc. Any suggestions... I am in dc area. Good gamma ray facility? Any infor orgood questions to be aware of is greatly appreciated! Thanks alicia

So Sorry to hear your news...I don't have any input on this subject, but keep us posted on your progress.

You can beat this back too!

Alicia, I guess the good news is that you've caught them early while they're small; I know from the info shared by the brain mets survivors here that your odds of beating this are good, and you know you've got the best support system for that here. Let us know what the rad onc says, and hang tough, you'll get through this.

Love, Lolly

I think Chrisitine had stero and wbr. I had craniotomy and RT. As this web page has on the first page. it is very scarey but also very manageable with all that is available. i have had several bouts with bc and only brain mets. i am now on Herceptin every three weeks thanks to finding this site. Good luck to you. Not to minimize brain mets and it's severity but when i had stereotactic surgery it was so non=invasive and easy that i told the dr.it was actually easier than when i had botox injected in my forehead. I am not trying to trivialize your terror or tourment but just to let you know it is less scarey than it all sounds. I began this journey at age 32 and happy to be alive and thriving at 36. I thought brain mets meant a death sentence and that is simply not true. I think many people have great success in this area. There is a lot of hope and support for you here.

Alicia,
As you have heard, this is a great site for information on brain mets and treatment. I hope that your treatment goes well and I've said a prayer for you.

Hugs,
Janelle

I've had the WBR and Gamma knife. Doing fine now except for left over fatigue. If you have any specific questions, give me a shout. I'm sure you will do fine. God Bless. Kathy

I have no info, just saying a prayer for you.
el

I'm sorry you were given such scary news. But know that this is VERY beatable. With only 2 tumors, you shouldn't need WBR it seems to me. You sound like the perfect candidate for CyberKnife which is similar to GammaKnife, but involves one short or two short sessions with no headframe. Back a couple of months ago, I listed the current CyberKnife locations on this Board. Try a search for the one nearest you.

Love and healing light,

Lisa

What symptoms did you have?