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Old 04-20-2007, 01:47 PM   #1
Rupali
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Join Date: Dec 2005
Posts: 148
Confused about Tykerb

Hi all,
Whenever I am confused I always come here and try to get answers. And thats what I am doing today.
This time the confusion is about Tykerb.

So let me first explain my diagnosis and treatment.
December 2004 found a lump in right breast
Right breast mastectomy: December 2004.
Stage 3C with 12 out od 22 nodes postive. 9cm lump Grade 3, ER+, PR+ (10%), her2+++
4 DD AC, 4DD Taxol
2 years of Herception every 3 weeks (now finished)
Tamoxifen and zoladex started in 2005 when my periods returned

SO I am done with Herceptin now and soon will be switching to AI with zoladex.
Now comes the new drug Tykerb.
My husband does his research and finds that Tykerb is a good medicine and can cross blood brain barrier.
I have 2 oncs, one is at a big cancer research center in Boston and the other is a community oncologist.
What I am confused is that is Tykerb something I should take now or keep it as an ammunition in case I need it at a later time.
If I was to take Tykerb now then would it be with Xeloda or tykerb alone. The community onc said there is no need of xeloda and she would not agree for it.

Is it a good idea to just take tykerb for 3-6 months?

My EF is down to 45-50% right now and is that sufficient to start tykerb?

Does anyone know how cardiotoxic is tykerb?

Please answer, I am all confused.
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Old 04-20-2007, 05:53 PM   #2
chrisy
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Location: Central Coast, CA
Posts: 3,207
Dear Rupali,
Yes, lots of people are asking this same question - MicheleU is also Stage III and is in the process of trying to get it (and deal with the insurance issues). In the US, the FDA approval is for Stage IV in combination with Xeloda. So any other use, such as in your case without metastatic disease, would be considered "off label" and therefore a tougher decision and more difficult. But possible as Michele has found out.

Because Tykerb also targets HER2, there is still a concern with cardiac toxicity - maybe not as much but I don't know that there is a lot of data in this regard. I know that part of the qualification for the trial I am going into (Tykerb/Avastin) is, you guessed it, LVEF in normal range. So having an LVEF of 45-50% may put you at risk or preclude you from getting this drug. Might be better to get your heart back up to full strength first.

Also, remember you have had a lot of herceptin - seems like double the normal course of treatment.

It's a tough decision in your situation, I know. My advice would be to get your heart function back up before thinking about hitting it again with the Tykerb.
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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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Old 04-22-2007, 04:07 AM   #3
Rupali
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Join Date: Dec 2005
Posts: 148
Is anyone considering taking tykerb just for 3 or 6 months?
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