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Old 03-21-2007, 04:16 PM   #1
LOLLI
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Upset Friend

This is my first time to post, I've been reading about all you wonderful women for months. I was hoping my friends cancer journey would turn out like a lot of yours has. But it doesn't sound like that is going to happen. She was diagnosed January 2006 with Her2+ ER-PR-. No node involvement. I don't remember the type of chemo she initially went on. She then was put on Herceptin. Over the holidays brain and lung mets were discovered. She did radiation for the brain and then Taxol and Carboplatin with Herceptin for the lungs. Yesterday they did the CT scan and her lung mets were larger and the liver is now involved. NOtHING is working. How can this be??? She is 54, works everyday and says she feels fine. Does anyone know what to expect from here?? We need some hope.
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Old 03-21-2007, 08:46 PM   #2
Lolly
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Hi Lolli, from Lolly

So sorry your friend is having such a hard time finding a combo that will keep things in check. Some of us have had to try multiple combinations to finally find a "coctail" that works. Sometimes it's very discouraging, but the since your friend feels well and is able to work and live her life, that is cause for encouragement.

I would expect her onc to try another combo, there are several more that are quite effective. Also, Tykerb, another Her2 targeted therapy, was just approved and that may be another option for her.

She is lucky to have a friend like you who cares enough to be involved in helping find answers.

Keep us posted on what her onc advises, and hopefully we can help answer questions, give support and in general be a "shoulder".

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 03-21-2007, 08:51 PM   #3
chrisy
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Hi Lolli,

First, do not give up hope. The fact that your friend is feeling well and able to function is VERY good, and may mean she has more opportunity to try other options.

Unfortunately, herceptin does not work for all Her2+++ women, perhaps your friend is one of those for whom it is not effective. Same story with chemos, not every chemo works for every person - so much is dependent upon the individual biology of the cancer. Breast cancer is a very heterogenous disease.

This doesn't necessarily mean that NOTHING will work. There are other options, other chemos. There is a thread in Articles of Interest I think that was recently posted by Lolly (great name, huh?) listing "all" the chemos used to treat breast cancer. Some with mets to lungs have done very will with Navelbine. Also, she may be able to try Tykerb which also targets Her2 and Her!. She would be eligible for this new drug as she has clearly had progression on Herceptin. Avastin is also a possibility.

Again, the fact that your friend feels well and is apparently completely able to function is very good news - this means that she is strong enough to consider and try some of these other options, and that she may be eligible for clinical trials. Is she seeing a top oncologist (meaning at a major cancer center)?

Please do not give up.

Much love
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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Old 03-22-2007, 02:50 AM   #4
LOLLI
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Thanks so much Chrisy and Lolly for your words of encourgement. She is going to the Cancer Center at Ohio State University. All these test results were sent there yesterday. They are making all the decisions for her care and advising a local onc. what they want done next. I've been doing lots of research, and I know there are many other options out there, Tykerb being one, I just don't know how long this can go on until that "cocktail" is found. She is a strong lady and is in great physical shape, having exersized for years and eaten all the right food. Just doesn't seem fair.

I have been so positive reading all your posts, hoping she could be NED eventually like so many of you. I know I sound selfish right now, but I'm not ready to lose my friend. I'll let you know what they decide the next attack will be.
Thanks again
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Old 03-22-2007, 05:32 AM   #5
eric
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Lolli,

You're entitled to be selfish in this situation. I just want to echo the words already said which is to try and maintain confidence in her medical team to find the right combo for her. One other thing that helps me when I sometimes feel down is to think of a pipeline that is filled with so many wonderful drugs. As one doc said to a friend..."who knows what great drug will come out in the next six months".

Hugs,
Eric
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Old 03-22-2007, 09:44 AM   #6
Lolly
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Lolli, here's the link Chrisy mentioned.

The BreastCare Site: Common Breast Cancer Drugs
http://www.thebreastcaresite.com/een...256CCA00623800
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 03-22-2007, 04:15 PM   #7
Joy
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thinking of you and your friend

Again, I'm sorry, too, that your friend has to deal with all of this. The other women are right-there is much more to try-especially if she is strong. She is lucky to have a friend like you. As someone who is blessed with people like you in my life I can tell you that the difference you are making for her through all of this cannot even be verbalized. Keep in touch. there is no better site for breast cancer support and information.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 03-22-2007, 04:37 PM   #8
LOLLI
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Thank you all for your support. I just talked with my friend and Tykerb is being ordered, in combination she thinks with Xeloda. I told her about the supportive people on this board and I think she may be ready to read some posts.

Bonnie, if you read this, Love you
Candy
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