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vqtilley · 12-22-2018, 09:41 AM

Hi - very sorry you're dealing with this. Everyone's case is different, but I think you have good reason to hope.

Three years after my diagnosis (Stage IV), in Spring 2015, I was found to have a sizable met in my cerebellum. Had an 8-hour surgery at the Siteman Cancer Center at Barnes (St Louis) to resect it and then Gamma Knife radiation treatment. The combination seems to have gotten the whole thing: at least, I've had no brain mets since.

Gamma knife is amazing. They can adjust the hundreds of killer beams to the exact shape of the lesion/s with no impact on neighboring tissue. Ideal for brains. Side effects for me were an unpleasant background nausea that lingered for months, contrary to what they told me was normal, but it eventually disappeared. The treatment isn't a pleasant process to go through because they have to *bolt* a frame to your head in order to precisely aim the rays and you have to lie in the (silent) machine for about an hour unmoving in this thing. The last 15 minutes I found especially hard. They take it off immediately afterward but it's a small trauma - well worth it, of course. Someone here suggested bringing their own music - very good idea!

I should clarify that I went on Kadcyla several months later due to a general progression (right axilla, etc.). That was far harder than the Gamma Knife due to side effects, but it knocked out the progression and although I went back on Herceptin about six months later (due to low platelets) I've had no progressions since. I think the brain surgery may have been fortuitous because, while Kadcyla can apparently breach the BBB, it seemed more certain if the BBB is already breached by surgery. Anyway, Gamma Knife plus Kadcyla has extended my survival by three years so far and all scans are still clear, so I'm definitely a fan!

I'd guess you've figured this out already, but I'd suggest avoiding WBRT (whole brain radiation therapy) if you possibly can because it can have profound cognitive effects down the road. And it seems we generally can. I believe that Gamma knife is now the standard of care where there is one or just a few lesions that can be zapped by it. And if another lesion appears, it can be zapped, too. Leptomeningeal disease is the worry I have now, but after three years I'm more optimistic.

Warm wishes in all this!

12-22-2018, 09:41 AM	#13
vqtilley Member Join Date: Mar 2015 Posts: 13	Re: Brain met ??? Anyone have advice Hi - very sorry you're dealing with this. Everyone's case is different, but I think you have good reason to hope. Three years after my diagnosis (Stage IV), in Spring 2015, I was found to have a sizable met in my cerebellum. Had an 8-hour surgery at the Siteman Cancer Center at Barnes (St Louis) to resect it and then Gamma Knife radiation treatment. The combination seems to have gotten the whole thing: at least, I've had no brain mets since. Gamma knife is amazing. They can adjust the hundreds of killer beams to the exact shape of the lesion/s with no impact on neighboring tissue. Ideal for brains. Side effects for me were an unpleasant background nausea that lingered for months, contrary to what they told me was normal, but it eventually disappeared. The treatment isn't a pleasant process to go through because they have to bolt a frame to your head in order to precisely aim the rays and you have to lie in the (silent) machine for about an hour unmoving in this thing. The last 15 minutes I found especially hard. They take it off immediately afterward but it's a small trauma - well worth it, of course. Someone here suggested bringing their own music - very good idea! I should clarify that I went on Kadcyla several months later due to a general progression (right axilla, etc.). That was far harder than the Gamma Knife due to side effects, but it knocked out the progression and although I went back on Herceptin about six months later (due to low platelets) I've had no progressions since. I think the brain surgery may have been fortuitous because, while Kadcyla can apparently breach the BBB, it seemed more certain if the BBB is already breached by surgery. Anyway, Gamma Knife plus Kadcyla has extended my survival by three years so far and all scans are still clear, so I'm definitely a fan! I'd guess you've figured this out already, but I'd suggest avoiding WBRT (whole brain radiation therapy) if you possibly can because it can have profound cognitive effects down the road. And it seems we generally can. I believe that Gamma knife is now the standard of care where there is one or just a few lesions that can be zapped by it. And if another lesion appears, it can be zapped, too. Leptomeningeal disease is the worry I have now, but after three years I'm more optimistic. Warm wishes in all this! __________________ Feb 2012: diagnosed with 1 cm lesion rt breast, DCIS left breast, Stage IV ER+/HER2+ Apr 2012: bilateral partial excisions; confirmed met to left proximal femur, long gamma nail inserted to stabilize femur: May 2012: radiation to femur: chemo with Trastuzumab + taxane. July 2012 thru Mar 2015: started maintenance regime Herceptin+Arimidex+Denosumab, NED May 2014: recurrence in right acetabulum: 15 fractions radiation Jan 2015: lesion in left cerebellum: resection & gamma knife treatment Mar 2015: major general progression; small mets confirmed in rt axilla, rt breast, T7 vertebra, possible met as isolated spiculated pulmonary nodule left lung[LIST][]27 Mar 2015: start Kadcyla, discontinue aromotase inhibitors; within two weeks axilla/rt breast lesions are shrinking noticeably[]18 April: resume letrozole []May: all lesions disappeared or dormant[]June - discontinue Kadcyla due to low platelets[*]Aug & Nov 2015 MRI brain/spinal scans all negative for CNS disease: no recurrence to date Fall 2015 - stereotactic radiation to lingering T3 lesion to relieve pain; 90% effective within weeks July 2019 - discontinued Letrozole due to side effects April 2020 - short course steretactic radiation to 2 cm lesion in upper left lung; subsequent scan finds it reduced Mar 2021 - 6.5 cm mass found in left lung; FISH finds it is PR-, ER- and strongly HER2+. 16 April 2021 - Resume Kadcyla.