Hi All,
I was diagnosed with brain mets 2 weeks ago, up to this point the worst I had was lymph involvement in my neck and face, some facial paralysis and disfigurement. (All seems rather trivial now!). So this development has come as rather a shock after living with it for 6 years.
My onc has stopped the docetaxol after 3 cycles as it a) wasn’t working very well, b) hospitalised me twice, and c) doesn’t get thru to the brain very well. I am starting radiotherapy on 30th March to my face and neck, between 6-10 sessions. Then will have a break, then start radiotherapy to my brain.
My onc has said he is ‘not entirely pessimistic’ in terms of prognosis, and when pushed further gave me between "months’ or ‘longer’ depending on whether it ‘works’ or not. Can anyone be anymore optimistic than that and tell me their good news in terms of radiotherapy and brain mets? I can’t beleive I’m going to die within months, I feel so well in every other way! Is longer term survival possible? I’d take 2 years if offered…!!!
Thanks for your advice.
Bex1
Hi Bex
so sorry to hear you have brain mets dx. I think this is one spread that must be very hard to (was going to say get your head around but seems inappropriate).
Kitkat kept a diary when here was diagnosed which you might like to do a search on. She lived for 2 years after brain mets dx and did very well during that time. Is your oncologist going to put you on further chemotherapy. I know most of them dont cross the blood/brain barrier but I think capecitabine is thought to.
I do hope the radiotherapy goes well for you. I think in terms of survival so much depends on where and the extent of the mets in the brain area.
Sending cyber hugs
Dawn
xxx
Thanks dawn, just the sort of info I was looking for! Will follow this up - feel reassured already. If its possible to last 2 years thats what I’m gonna aim for!
Been on Capecitabine several times for lymph node secondaries, stopped in Dec when it seemed to be less effective, but could go back on after radio I suppose. V few side effects, so may be just the ticket if it works on the brain. Thanks for that!
Cheers
Bex 1
I was diagnosed with brain mets just over 6 weeks ago and they’ve not been the most fun weeks of my life but this has been mostly down to the impending doom but as the shocks starting to pass I can see things for what they are better now.
Brain mets is one of the less understood areas of BC and I think that they sometimes think it helps us if we can place our trust in them but this is one area where a lot of research is being done so all they can give us is best guesses, of course that’s true anyway but especially sp in our cases.
Just try and focus on now and if you’re up for it have a read of
brainmetsbc.org
It’s helped me a bit actually but if you’re not
ready for info take your time you’ve got more time than you think I’m sure. Ask any questions I’m only a few weeks ahead of you but I’m a lot calmer now.
Lots of love and hugs,
Angie
Hi Bex, I had 2 friends who lived for over 2 years, one of the friends went to New York and met her future husband there…all after her brain mets diagnoisis and treatment…Take Care, Love Belinda…x.x
Hi Bex 1,
Sorry to read your news. I just wanted to add that capecitabine is one of the drugs that is often given for brain mets - after radiotherapy - and sometimes in conjunction with other drugs.
Good Luck with your treatment,
Jenny
x
Hi Bex1
I was diagnosed with brain mets a year ago. I had surgery, Gamma Knife and chemotherapy with Cisplatin and 5fu. My remaining tumours disappeared from the MRI scan. I have just had more Gamma Knife for a new tumour and am hoping for a good response again. I have been told that Capecitabine would get into the brain when I need it. I have managed to fit in lots of fun things as well as the treatments in this past year and feel quite well at the moment. I hope you feel better once your treatment starts.
Best wishes, Gemini
I was diagnosed with 3 inoperable (and terminal) brain mets in Feb 2008 (after first getting BC in 2003 and then IBC in 2006). I was in a pretty bad way, but steroids and brain radiation sorted it out and I was discharged from hospital on a reducing dose of steroids, as there was still some oedema from the mets.
In the summer the IBC returned on my chest & back, so I was put back on herceptin. This didn’t seem to have any effect, so I was put on capcitebine as well. I developed very thin skin on my fingers and some problems with my finger and toe nails, but generally tolerated it pretty well and the IBC disappeared. Scans at the end of 2008 showed the mets shrunk to what is probably just scar tissue, and no new mets anywhere, so my onc took me off the steroids and the capcitebine. I’m now just on herceptin, which doesn’t seem to give me any side effects.
Last Feb I wasn’t expected to survive, but I’m now feeling fit enough to be booking holidays in the Lake District and Holland. I’ve even got hair, and my finger nails have almost recovered!
Some people seem to have a bad time on capcitebine, but I didn’t find it too bad, and it certainly worked for me.
Best of luck with the treatment.
Love, Lynn