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Old 06-27-2011, 02:36 PM   #1
7andcounting
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Smile Need advice about upcoming drug trial

Hi,

Please excuse my jumbled thoughts, but I am in a decision phase and having a hard time getting my thoughts straight. Any help you can give would be so appreciated.

I'm stage 4 and starting on a new drug trial this week --unless someone tells me there is another option. The trial will be Herceptin, Navelbine and a pill you take 1x daily. The pill will either be a placebo OR TDM-1.

Has anyone been on a similair drug regimine?

I feel torn. If I could be garunteed the TDM-1 pill arm of this trial, I would feel better.

Or better yet, if I could just get TDM-1 and not have to take it with anything. I'm in Oregon and seems the closest place to get just TDM-1 is Highland, CA.

Could it be that this drug trial is actually a blessing and I'm just not realizing it? (trial avaliable through my current onc.)I've been on Tykerb, Herceptin and Zometa for the past year, and I'm not convinced it helped. I already feel very tired and worn out and I am concerned about the addition of Navelbine making my life a lot harder.

I'd apreciate anyone with any experience with this giving me their insight.

Thank you!
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Old 06-27-2011, 04:50 PM   #2
chrisy
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Re: Need advice about upcoming drug trial

Without knowing your treatment history, here are some thoughts. And of course I'm not a doctor so not qualified to recommend anything, so I'm responding based on what I would consider doing myself

First, as far as I know, TDM-1 is only available as an infused drug - are you sure about the description of this study? Maybe you could post the trial #, or recheck what it is.

It looks more like the BOLERO trial which is Herceptin/Navelbine and Everolimus (Affinitor), the latter being an agent that targets the MTOR pathway. That is a trial I would personally consider (coming off TDM1 and in decision mode myself right now!).

http://clinicaltrials.gov/ct2/show/N...rceptin&rank=4


I haven't had Navelbine (yet!) but know many women who have done very well on it - both efficacy and tolerability. If you are feeling that the Tykerb/Herceptin hasn't quite been able to keep things under control, maybe it is time to try a stronger option. Herceptin/Navelbine is a good combo, even without the everolimus.

TDM1 is a great drug - it drove me to NED and kept me there for 3 years. I think that would also be a good option and should be in your arsenal - if not now, then for later. As I think you know (from your other post), Genentech is working on a protocol change for the EAP which would allow patients in an EAP trial, after they get started, to get some treatments at home. Getting this protocol amendment through and approved will probably take a bit of time. Keep in mind, if you are fatigued, TDM1 is a slightly tougher road than vanilla herceptin - and particularly so if you have to travel to get it.

Interesting how the options present...and how doors and windows open and close without us knowing why, for us, they are doing that at just that specific time.

Sounds like you have good options, and you will make the right choice for you, whatever that is.
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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

Last edited by chrisy; 06-27-2011 at 04:53 PM..
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Old 06-29-2011, 05:03 AM   #3
mamacze
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Re: Need advice about upcoming drug trial

Are you a new stage 4? It is hard to know what to suggest without knowing your treatment history...you are in Oregon? Any chance you are with Dr. Devon (who was formerly with Dr. Disis in Seattle?)
I started out with Herceptin and Navelbine as my adjuvent therapy when newly diagnosed stage 4 and had a whomping good result...have been NED for 7 1/2 years since. Please stay with us and keep us posted on how you are doing.
Love Kim from CT
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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