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Old 03-04-2008, 08:21 PM   #81
Faith in Him
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Lily,

It is so hard to wait. I am sure your Onc. will give you a better understanding of what is going on and the next step to fight this. We are all behind you, praying and sending warm thoughts your way.

I wish I had an answer for you on the treatments. It does seem like there a quite a few chemos that you have not been on yet according to your signature. Hang in there, my dear. The right combo is coming your way.

Hugs,
Tonya
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DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 03-04-2008, 08:33 PM   #82
eric
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Lily,

In addition to the options you mentioned, I've also heard good things about heat shock protiens and also pertuzamab. Please ask your dr about those. I love the idea of something like cyberknife depending on the size, number and location of the lesions. Seems to me that you have a lot of other options including chemos, tykerb, avastin and different combos.

Please let us know what your dr says. I'll be thinking about you.

Eric
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Old 03-05-2008, 06:56 AM   #83
runtolive
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the herceptin ..in your case is just the delivery mechanism. much like your car is when u drive to the doctor office.. its the toxin.. the dm1 portion that is helping to kill the cancer cells now.. herceptin alone only yields response rates of 20-25% for a short period of time.. early results of the trastuzumab-dm1 are showing stable disease and partial response of 80% in the original phase 1 trial. the goal of the drug is to extend life beyond what herceptin + chemo originally did...

i dont know for sure but i think the four months you were on herceptin-dm1 may qualify as a treatment success.. but that is for genentech to decide. good luck .. the docs still have more options regarding your liver mets.. hopefully surgery can be an option. if the mets are small...

run to live
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Old 03-05-2008, 03:02 PM   #84
jones7676
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Thinking of you

I just wanted you to know that I am thinking of you....I hope they find a solution to your problem soon, so that you don't have to worry so much. I'll be watching for your post.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 03-05-2008, 03:57 PM   #85
Barbara H.
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Hi Lily,
I want you to know that I am thinking of you. Let us know what you have heard.
Best,
Barbara H.
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Old 03-05-2008, 05:14 PM   #86
chrisy
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Lily,
I'm so bummed that this drug stopped working for you. It is very discouraging - for you of course, but also for me. I know that's selfish but I also think you would understand.

On the positive side, still only in your liver is very good...and as you know lots of members here have done great, and for a long time, on Tykerb/Xeloda. When my onc and I discussed the possibility of doing RFA or another local treatment, she also felt that she wouldn't want to do that without also doing systemic treatment. Hopefully the T/X will be so effective that you won't have anything left at all anyway!

Hang in there, Lily, you are such an inspiration to all of us.

Much love
Chris
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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 03-10-2008, 01:59 AM   #87
MPB
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Lily,

I am sorry to hear about your set back, but hang on theprayers are on there way. I still believe in mircales because I am one. love and peace surround you at this time.
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IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.

"Believe in miracles, and watch them happen!"
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Old 04-15-2008, 09:02 AM   #88
runtolive
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barb.. how has your treatment been doing...

hope all is well..

run to live
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Old 04-15-2008, 06:42 PM   #89
Barbara H.
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Hi,
Look at my update on the thread I started. Everything is going well.
Thanks,
Barbara
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Old 05-29-2008, 10:45 AM   #90
runtolive
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how has your trial been going..

run to live
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