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Old 12-20-2011, 09:50 PM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: NED Stage IV? Chemoless stage IV?

Oh I do, but I knew I couldn't do it justice on the iPhone. So now on my iPad it's easier but still may just decide to type something different than I wanted...

I'm "only" liver mets, since 2004 and although I am currently in treatment for active disease (stupid cancer) I have been NED twice, most recently on tdm1 for over 3 years, 2.5 of them NED.

That dude (Ned) can be a real flake, teasing some of us with relatively long term relationships or just refusing to show up for others. But NED's not the only game in town, and many of us do well enjoying flings with the STABLE boy... Heaven knows I'm not trying to make light of a serious subject (especially since I am currently in active battle, looking for some love from either of them! But I do better when I laugh than when I cry, and ya gotta do something, right?

The truths are, as of now, stage IV bc is not curable and those of us in that game expect to be in some kind of treatment for the rest of our lives, even while hoping the cure is just around the corner. But not curable is different from not treatable, and there are lots of agents that can work well and for a long time. Increasingly I hear top researchers/clinicians using the "c" word in the same sentence with "metastatic", so there is much reason for hope.

Till then tho, all I can say is "always" and "never" as in your questions doesn't really apply. The overall strategy as I see it is to maximize disease control with as little toxicity as possible - so you can maintain your body's resources for the next attack. As many wise people here say, it's a marathon, not a sprint.

For me, I've been fortunate to be able to be effectively treated largely with targeted therapies, which can be much less toxic to you but still nasty to the cancer. But it really all depends on how your individual cancer responds. So there are no absolutes, but there are many options which can allow you to treat the cancer while minimizing the side effects.

One final comment, beware of statistics especially with her2+ cancer, this field is changing rapidly and in the past 5 years has turned out to be a favorable factor, and much research is going on in this area.

I know I haven't really answered your questions, but there are no "right" answers beyond this: there is much to be hopeful about. Do not lose heart.
__________________
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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