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Old 10-03-2010, 11:34 AM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Intro - and Herceptin and Tykerb for 30 yeard old with stage iv, mets to liver

Hi,

what a roller coaster- it was a little hard for me to follow what you've been doing!

If I understand correctly, you were on TCH and it did work but because the scan was misread, you thought it didn't and entered the EMELIA trial where you were in the Tykerb/Xeloda arm then back to "finish" 6 cycles on TCH after the scans were reread. Yikes.

At a minimum I imagine you've learned to ALWAYS get strong confirmation when scans indicate a treatment change is in order!

So now your onc is recommending Tykerb/Herceptin/Femara. This is not a super common combination but mainly because Her2+ and ER+ is less common (I for example am ER/ER neg and Her2 positive).

I think you should go back to your oncologist and ask for a thorough explanation of why she recommends that path - because it is important that you understand and agree. Perhaps what your onc meant about the hormonals not working is that, since you have such strong Her2 positivity, that overpowers the ER blocking therapy and she wants to try hitting the Her2 pathway harder.

My thoughts (and remember I'm not a doctor, just a patient!) are that if there is not too much disease, it could be a good thing to try provided you get early follow up as you say (scans at 6 weeks).

You've got a "target rich" environment, and if you can find targeted therapies that are effective I agree that's the way to go. Tykerb and Herceptin are both Her2 targeting agents but they work differently and Tykerb also targets other parts of the Her pathway (Her1 if I remember correctly). That's why early studies are showing synergy with Herceptin and Tykerb.

There has been some indication in studies that blocking either Her2 or ER pathways can actually activate the other one, so blocking both is important. The key actually is to block ALL the pathways at once.

The issue of insurance is likely being raised because although all three are approved therapies, Tykerb/Herceptin in combination is not technically an "approved" combination and some folks have had their insurance company balk, but have been able to successfully challenge it.

I know that there are others here who have done very well with Herceptin/Tykerb (some with Avastin added) and I hope they will chime in.

The whole thing stinks, and any setback can feel devastating (I know this from experience, too). But you have many options, are being cared for at an excellent facility, and I sense you are not one who is going to give up easily!

Keeping my fingers crossed that the triple target therapy will work well for you.
Chris
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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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