HER2 Support Group Forums - View Single Post - Brain Mets

09-23-2005, 01:22 PM

Beth! That is fantastic news actually, about your chemo working. Brain mets pretty much suck as for treatments and response.

I can speak of focalized rads, having had five treatments over the course of 18 months to treat a total of 16 brain mets. I just refused whole brain radiation along the way.

Three of my tx's were Linnear Accelerator, similar to Gamma Knife, but a different machine. Both use the 'screwed on' headframe. With enough pre-meds (emphases on ENOUGH) having it placed on head is not too terrible. As well as more meds during the day if it will be long. The tx's themselves are painless, unless the pins on the back side of your head are giving you pain.

Getting the frame off is a trip, as backing the pins out make it tighter on the opposite side. Bad headache will last 1? or 2 hrs no matter what. But then it's gone. My hair thinned in the areas treated.

Had two CyberKnife tx' which I preferred as there is no headframe but a form fitted( drys hard) plastic mesh facemask. Back of head can start to hurt if you are on table more than 1/2 hr to 45mins. I was. So, I took two Ativan the 2nd time and slept through most of it.

This time with the CK, I went totally bald in two small areas in the back of my head where radiated. They have grown back in fully.

Other side effects..... I had a bit of a headache and what felt like pressure for about a week. That's it.

That all said, now with progression of brain mets, having any kind of radiation brings MUCH higher risk of damage to brain. I have been turned down for any more focalized tx's. Since at this point WBR is even MORE risky, am hoping my chemo cocktail of Xeloda/Temodar will show some response. Tumors in Cerebellum and on brainstem/pons are problematic.

When Mri showed 14 new lesions, all small...as I said above, I waited 15 months to have them all treated. I had no symptoms and they grew that slowly. So, if you chose to, I expect you could do the same thing. Wait until next scan and then decide which way to go. Wait again, or have treatment of your choosing.

Or, best case scenario..... a different chemo could address your current small one and any more down the road!!! That really is fantastic you know.....
sending you big hugs,
xoxoxpattyz

09-23-2005, 01:22 PM	#10
pattyz Guest Posts: n/a	Beth! That is fantastic news actually, about your chemo working. Brain mets pretty much suck as for treatments and response. I can speak of focalized rads, having had five treatments over the course of 18 months to treat a total of 16 brain mets. I just refused whole brain radiation along the way. Three of my tx's were Linnear Accelerator, similar to Gamma Knife, but a different machine. Both use the 'screwed on' headframe. With enough pre-meds (emphases on ENOUGH) having it placed on head is not too terrible. As well as more meds during the day if it will be long. The tx's themselves are painless, unless the pins on the back side of your head are giving you pain. Getting the frame off is a trip, as backing the pins out make it tighter on the opposite side. Bad headache will last 1? or 2 hrs no matter what. But then it's gone. My hair thinned in the areas treated. Had two CyberKnife tx' which I preferred as there is no headframe but a form fitted( drys hard) plastic mesh facemask. Back of head can start to hurt if you are on table more than 1/2 hr to 45mins. I was. So, I took two Ativan the 2nd time and slept through most of it. This time with the CK, I went totally bald in two small areas in the back of my head where radiated. They have grown back in fully. Other side effects..... I had a bit of a headache and what felt like pressure for about a week. That's it. That all said, now with progression of brain mets, having any kind of radiation brings MUCH higher risk of damage to brain. I have been turned down for any more focalized tx's. Since at this point WBR is even MORE risky, am hoping my chemo cocktail of Xeloda/Temodar will show some response. Tumors in Cerebellum and on brainstem/pons are problematic. When Mri showed 14 new lesions, all small...as I said above, I waited 15 months to have them all treated. I had no symptoms and they grew that slowly. So, if you chose to, I expect you could do the same thing. Wait until next scan and then decide which way to go. Wait again, or have treatment of your choosing. Or, best case scenario..... a different chemo could address your current small one and any more down the road!!! That really is fantastic you know..... sending you big hugs, xoxoxpattyz