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Old 06-10-2008, 10:57 AM   #1
doh2pa
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Hi Therese,

I'm so sorry to hear about your recurrence. It seems to me that a lot of recurrences happen within the first 2 years - mine was at about 18 months.

I am also on Herceptin and Abraxane (along with Carboplatin - yuk!). I get the full shabang once a month and then 2 weeks with just Herceptin and Abraxane (then 1 glorious week off - hooray!) I do get a small amount of bone pain for the first 24 hours after. I can control it with Tylenol and sometimes a Percoset, if it happens around bedtime. Are you taking anything to control the pain?
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 06-10-2008, 11:11 AM   #2
duckface
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Hi Donna,

During the day I take generic Aleve. I called the oncology center to speak to the nurse and she told me Abraxane isn't known to cause joint pain but to go ahead and try the Aleve. At night I take Percocet if the pain is really bad but that stuff binds me a lot.

The literature they gave me on Abraxane clearly states joint/muscle pain is a side affect. I haven't had any neuropathy in my hands or feet yet, but I have only had one round. I get the Abraxane and Herceptin every three weeks but I don't know how my treatments of Abraxane I will receive.

Thanks Donna for responding. The Her2 positive situation is an entirely different ballgame.

What does Her2++ mean???? Mine was 2.8.

Therese
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Old 06-10-2008, 05:27 PM   #3
chrisy
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Hi Therese,

Yep, I know you must be feeling angry, frustrated, cheated by this recurrence. It does make it hard to "keep the faith" as you say.

Interesting that it is now Her2++ when the original tumor was negative. Her2 positivity CAN change, so it could be a recurrence or possibly a new primary. Not that that would make it any better...

The good news is that with Her2+ cancer, the prognosis is actually now better than for Her2- in some settings. And there was just data released from a trial of Abraxane and Herceptin that is very encouraging.

As you know, chemo is no picnic, but Herceptin is such a great drug that has really changed the picture for that type of cancer. You can, and should, find out as much as you can about the type of cancer you are dealing with - but be very aware that the situation has changed - like 180 degrees - with Herceptin, and much of what is "out there" is old news.

I guess I'm trying to say, don't be discouraged by doom and gloom stats about Her2+ disease because it's different now.

Her2+++ means that the cancer you have has too many copies of a protein called Her2neu. This is called "overexpression". Her2neu is a growth factor which is present at base levels in healthy cells, and signals when the cell is to reproduce. But in cancer cells where Her2 is overexpressed, it basically is signalling the cells to go reproduce like crazy. Herceptin interferes with this signaling by locking onto the Her2 receptor and in effect, turning it off.

Hang in there, you will do well on the Abraxane and Herceptin, and assuming you continue on Herceptin alone you will find THAT very tolerable (and you're hair will grow back!)
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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 06-10-2008, 06:02 PM   #4
duckface
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Hi Chrisy,

I've read quite a bit about my cancer(s). I have all of the operative reports and path reports from all of my surgeries. I work for a hospital too. When I was first diagnosed in 2006 by core needle biopsy the path read invasive lobular carcinoma. When I had my lumpectomy the path read invasive ductal carcinoma. I was always confused by that... The path report from my mastectomy last month was much more detailed, with my Nottingham score, etc. My sentinel node biopsies from both surgeries were negative.

I lost my hair two years ago with the adriamycin/cytoxan regime. I know it will grow back. It grew back curly, was totally ash gray in color, and SOO thick.

Everything I've read about Herceptin has been pretty impressive. Unfortunately, when I saw my oncologist last he actually had to come in early to see me as he was booked solid and his main objective was to set me up for chemo and not answer questions. I will have my list ready for when I see him next week, before my next chemo treatment.

Thanks Chrisy and all of you for being here. I did have genetic testing last fall after my brother was diagnosed with breast cancer and had positive nodes, but it came back negative. My dad's mother died of breast cancer when she was 46 and so did her sister.

I don't mean to be so down and out. I just don't have a lot of people to talk to. You guys really help. Thanks for sharing!!

Therese
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