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06-09-2007, 04:51 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 589
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tykerb - success without rash?
I'm wondering if anyone has had success on Tykerb without a rash?
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06-09-2007, 07:00 AM
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#2
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Member
Join Date: Apr 2006
Location: Wisconsin
Posts: 10
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I have been worried about that also. I had a rash on my face with Herceptin but nothing with Lapatinib. I believe everyone reacts differently. And side effects are not normally definitive signs of effectiveness.
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06-09-2007, 07:25 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi,
I asked my Dr. that question because I got the rash on the placebo but not with the real thing. I started taking Tykerb almost a month ago and no rash...go figure. Anyway, she said it is ABSOLUTELY not true that you must have a rash to have effective treatment.
I was in a trial last year with Femara and a 50 /50 chance to get Lapatinib / Tykerb. I remember being so thrilled when I had the rash, then I found out last month that I was in the placebo arm...whoops, I guess that's why they call it placebo effect. Last month I was put on Tykerb (for sure) and I do not have a rash.
I can tell you that after 3 weeks my CA 15 3 has dropped for the first time in 6 months. It was steadily climbing about 10 points per month since I went off of Gemzar and switched to Faslodex. I will have scans in 4 weeks and let everyone know then the scan results.
I look forward to hearing others respond.
Thanks, Carolyn
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06-09-2007, 08:17 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Hi Eric
My onc also doesn't believe the no side effects/not working connection and she is one of the top docs in the country.
I've been on Tykerb/Avastin for 6 weeks and the most I could muster was a few pimples - and I was really trying! I just had scans last week which showed the cancer was completely STABLE (not bad for a "chemo-free" regime) and I expect even better results next time.
Remember, they stopped the Tykerb/Xeloda trials early because it was SO EFFECTIVE. This will be the case for you guys, too.
Maybe work on the diahhrea if that will make you feel better! On second thought....never mind!
__________________
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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06-09-2007, 08:27 AM
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#5
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Eric,
Thanks so much for asking the question. I have been on Tykerb for almost 3 weeks now and have had no issues at all and I was beginning to get nervous about that. The few replies here (thank you all!) have reduced my fears greatly.
Donna
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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06-09-2007, 04:12 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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I have been on Xeloda?Tykerb for about 6 weeks and have had some itching/rash but my onc lowered my dose on both and the rash is gone. She believes that you adjust the meds (everyone is sodifferent when it comes to chemo doses) so that the symptoms stay stable, but doeasn't believe you should experience severe symptoms, like diarhea or bad rashes. Hope this helps you and the best to you. Love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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