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Newcomers Club / Welcome Wagon With the stellar results of the adjuvant clinical trials of Herceptin, we have had many newly diagnosed patients visiting the HER2 Support Group. This Forum is just for them to post. "Old Timers" should only answer existing posts, but not create new

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Old 06-30-2009, 11:34 AM   #1
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Join Date: Jun 2009
Posts: 2
Question About Headaches

I am here on behalf of my partner who is currently battling Stage 3C Her2+ breast cancer. So far, she has had wonderful care from her surgeon, her medical oncologist, and her radiation oncologist.

She finished 4 DD A/C treatments in December, 12 consecutive weeks of Taxol/Herceptin in April, and 28 weeks of radiation in June. She is also on the ALTTO trial and has recently started 34 weeks of Tykerb (instead of Herceptin, per the trial). There was a bit of an overlap between the last few weeks of radiation and the beginning of the Tykerb trial.

Ever since she started the Tykerb, she's had a headache almost every day. Some days her headaches are very intense, other days less so. We were at her medical oncologist's office this morning and told him about the headaches. He didn't seem to be overly concerned about them, and thought it could be an unreported side effect from the Tykerb, coupled with the still residual side effects from the radiation. She's also having hot flashes like crazy. She did have occasional migraines before her diagnosis, but hadn't had too much problem with them during chemo.

I guess I'm concerned about the possibility of brain mets. Yes, I tend to be a bit neurotic :-). I pray to God that it never happens to her (or anyone for that matter). Hopefully, the Tykerb will work well. I know her oncologist didn't bring up mets this morning, which I take as a good sign, but I still get scared.

Has anyone ever had headaches like this at this point in their treatment and it wasn't mets? I guess I'm looking for encouragement or validation that I am indeed being overly worried.

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Old 06-30-2009, 12:25 PM   #2
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Location: Central Coast, CA
Posts: 3,208

I've had headaches (sinus-like) forever from Herceptin. I was also on Tykerb for a while and don't remember exactly but I think it was slightly "better" on Tykerb. It's been so long now that I don't really know what normal is any more!

I think that it is probably no coincidence that the headaches began at the same time as she started Tykerb, and that it is most likely a side effect of the treatment rather than a symptom of something worse. Change treatment, start headaches...

As with all symptoms, if it persists more than 2 weeks she would want to get it checked out. If nothing else, she would get a baseline MRI out of it and some peace of mind.

It's hard not to think the worst of every twinge - sort of comes with the territory.

Again, if it persists get it checked out but my gut says take the cue from her oncologist that it is nothing to worry about.
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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Old 06-30-2009, 12:45 PM   #3
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Join Date: Jun 2009
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Thank you, Chrisy. I appreciate you taking the time to answer.
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Old 06-30-2009, 07:50 PM   #4
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Join Date: Oct 2005
Location: New Jersey
Posts: 3,055
Hi Betteporter,
Just wanted to wish your partner best wishes on the
ALLTO trial...please keep us updated.

As Chrisy said, if it those headaches last longer than 2 wks due get them checked out...MRI is a good idea anyway to have as a baseline.

Kind Regards,
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-01-2009, 12:26 PM   #5
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Join Date: May 2006
Posts: 3,143
Wink Question About Headaches

A baseline MRI might rule out problem with the brain. If there does not seem to be a problem with the brain the headaches while on Tykerb can be reported to Glaxo Smith Kline's patient help line at 1-888-825-5249.
12 years and counting
Lucky 13 !! I hope so !!!!!!
14 Year Survivor
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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headaches, stage3, tykerb

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