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Old 10-29-2008, 10:40 AM   #1
babybellebooboo
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Join Date: Jan 2008
Posts: 1
herceptin side effects or brain mets

hi all
was wondering if anyone had a similar experience to me. i have had 5 doses of herceptin so far which i think i have dealt with ok. but about a month ago i had lots of little incidents start.
1) my scalp felt tender in 3 places when i was playing with my hair. at first i thought it was sunburn from a recent holiday but it is still there. i finished chemo end of may...could it be because my hair is still growing.
2) i have headaches but they are not severe...just constant
3) i have funny sensations in my head 2 or 3 times a day for a few seconds
4) i have a dizzy spell every 3 days but only for a second or two
5) and about every 3 days i have zigzag flashing in my eyes for about 5 minutes
6) nausea most of the day

i went to the gp and she ruled out an ear infection and high blood pressure so she is arranging a brain ct scan..just to be sure she says. i'm hoping it is something to do with the herceptin.

can anyone relate to theses symptoms with either brain mets or herceptin

many thanks in advance
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Old 10-29-2008, 07:31 PM   #2
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
I've had sinus like headaches with herceptin but not the variety of side effects you describe. Not to scare you, but if I had ongoing symptoms I would definitely want to get it checked out.

Rather than a ct scan, you should insist on an MRI - this is the gold standard in terms of scans of the brain, CT will not provide adequate information. Hoping it turns out to be nothing serious.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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