New Mets to brain/WBR
 

Hello everyone. I just thought I would let you know the cancer has spread to my brain. I have started WBR yesterday and I am very nervous and scared. I have to have 18 treatments. I asked about Gamma knife but I have too many spots to count and they are all small. The biggest one is 1.4 cm. I guess that is considered small. I would love to hear any advice, experiences or words of encouragement. Side effects, short term, long term, permanent? I have done a little research on line but I like to hear it staight from experience. Thank you for listening. I hope to hear from you soon. Sally

Re: New Mets to brain/WBR
 

Some info HERE

Re: New Mets to brain/WBR
 

Sally-

I have no wisdom to share but want you to know that I am praying for you. There are so many smart people out here...hopefully someone will have a personal experience to share.

In the meantime, feel the love, prayers and well wishes coming your way.

Maureen

Re: New Mets to brain/WBR
 

Hi Sally
No wisdom to share except "one day at a time". You can get through this.
Jackie (down under)

Re: New Mets to brain/WBR
 

Hi Sally,
I finished WBR (12 sessions) a month ago. I managed it with Boswallia extract without steroid. i was soooo scared before WBR, but finished it without major incidence. I know the side effects may come even after 6 months after WBR, but I am doing my best to recover and to avoid those ses. There are several succesful stories on this board and if you search WBR, you will find them. Those ladies are my inspirition. Hope everything goes well with your treatments. Grace

Re: New Mets to brain/WBR
 

Hey Sally,

Just wanted you to know that I'll be thinking only positive thoughts for a successful outcome to your treatment. I can only imagine how scary it must be. I know there are a lot of folks who can offer you advice.

Re: New Mets to brain/WBR
 

Was wondering if anyone is on Avastin for multiple brain mets? My daughter began that treatment 4 weeks ago (after having WBR) hoping it'll break through the BBB. What other treatments do they recommend for brain mets?

Re: New Mets to brain/WBR
 

Grace may I ask what meds you are currently on for the brain mets?
Joyce

Re: New Mets to brain/WBR
 

Sally/Joyce,
I too have brain mets. I was diagnosed with them on my seventh month of T-DM1.Had to stop T-DM1.
I have just finished with my second CYBERKNIFE round. I was first put on HERCEPTIN every three weeks, TYKERB 5 pills/day. It did not work. Metronomic CYTOXAN has just been added a couple of months ago. I am sistemically progressing nevertheless.
My oncologist refuses to put on AVASTIN, in spite of the fact that it appears the only way to go with brain metastases, she says that it causes brain hemorage, she says she would jeopardize her medical license if she does put me on AVASTIN. I would love to hear if other have their oncologist with the same opinion. PATRICIA

Re: New Mets to brain/WBR
 

Patricia: I think your onc is out of date on this issue. Go to an NCI facility for an opinion on this.

Good luck!

Re: New Mets to brain/WBR
 

Sorry to hear your news. I wish I could tell you Avastin was good or for that matter bad! My daughter was unable to have cyber knife due to # and size of mets. WBR did shrink them. I hope to hear from others on here who may be on Avastin for multiple brain mets that have had WBR. Can't seem to find anyone. I wish you all the best.

Re: New Mets to brain/WBR
 

DARLENE/DENISE,
Thank you for your comment. I need to get me a new oncologist!
PATRICIA

Re: New Mets to brain/WBR
 

Patricia: It might be that you need an additional onc to consult and advise with your local onc. Find one at a facility that does a lot of clinical trials for bc brain mets. You need someone who specializes in this type of situation. I get treatments from my local onc, consult at Dana Farber which enables me to access their clinical trials and actually had Cyberknife for the brain lesions at UNC. My local onc is receptive to this and welcomes info from thought leaders at leading NCI facilities to help us navigate my care. No one doctor can know and be on top of everything plus take care of patients everyday. This is were researchers come in handy.

Avastin has been proven as safe when using it on a patient that has brain cancer or brain mets, and has shown efficacy in some primary brain cancers, however, not a lot of data proving effective for breast cancer brain mets. Just because a drug can pass the BBB doesn't mean it will be effective on the breast cancer that is there. This area of treatment is not well understood or studied at this time for many reasons. Long way to go on this from what I have learned.

Wishing you well...Darlene

Re: New Mets to brain/WBR
 

Hi I have whole brain rads for 6 brain lesions the largest on my brain stem in the first part of 2007. My rads were down to my C-2 spine. So it affected my ears, and my jaw. But it was effective in eliminating the tumours. I had 1 lesion that popped up in different spot in 1/08 gamma 2 craniotomy of 99% necrotic (dead) tumour with some active cells so far my last MRI's have been good, with Tykerb and herceptin on board.

Overall I have done well with the radiation side effects I thought of the beams (Icould see a light when the beams crossed) As healing lights!!

I'am a little short on the short term memory, but who isn't raising 20 somethings and a 10 year old!!!! I Will be 43 in October, so is it chemo/rad brain,or like everyone else.... That is what little notebooks and to Do lists were made for!!! I also work puzzles and going to go back to reading novels, it is good to retrain your brain.


Peace prayers and Rainbows of hope to You !!
Darita

Be brave and never let the DR's push you around!!Seek this site out and follow through with second opinions as others have posted even if it is a trip to another state!!

All of this is scary, trust God, enjoy life and laughter. Laughing is good therapy mentally and physically.

Re: New Mets to brain/WBR
 

Hello -

Yes, the news of "BC spread to brain" is a kick in the gut. Catch your breath and take the next steps looking forward - never back.

Temador and Xeloda has been a long term successful combo for a few people who have tried it for brain mets.

You should see a brain SPECIALIST even if you have to travel a ways to get a good one.

I had two brain mets treated with gamma knife 5 years ago. No new ones since then.

Please post with your progress and questions.