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Old 12-09-2007, 06:50 AM   #1
lisajones4
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Any Advice for friend with IBC and triple negative

Good morning. I was just looking for advice for a friend who was recently diagnosed with IBC and is ER/PR negative and HER 2 -. She is Stage IV since it is spread to her liver. The doctor's have decided not to do a double masectomy because it has already spread to liver. I will find out today what combination of drugs she is on. "They are hoping only to extend her life" and not giving her much hope. Any advice or places she should look for advice would be greatly appreciated.

Lisa
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Old 12-09-2007, 08:43 AM   #2
Becky
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I would ask about (if chemo is going to be used) a taxane (Taxol, Taxotere or Abraxane) and perhaps add Avastin.

Even though Avastin isn't approved for breast cancer, the liver is full of blood and it would help prevent the tumors from forming a better blood supply. Also, it is well known that a taxane works very well in breast cancer that is not estrogen or progesterone positive.

Have faith. She is chemo naive and chemo may work very well for her. If it does, she could then get the primary (breast) taken care of.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 12-09-2007, 09:56 AM   #3
Lani
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they have recently found triple negative tumors to be

be most sensitive to cisplatin (heard at two major bc conferences, one in July, one in October--very recent work and I don't recall if it has been published yet) and a subset are EGFR positive and thus treatable with Tarceva as well.

Has she been BRCA tested?

Since they may be testing for EGFR to see if Tarceva is indicated, perhaps they would do additional IHC testing to look for other targets as there are clinical trials for all sorts of new targeted therapies
PPAR inibitors, mTor inhibitors, HDAC inhibitors, etc.

Is she near a major cancer center?
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Old 12-09-2007, 06:08 PM   #4
Ann in Boston
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You probably should also join the IBCsupport.org e-mail list. There are several hundred women with IBC on that list. Some are survivors of more than 10 years.
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Old 12-09-2007, 08:21 PM   #5
Soccermom
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I was thinking the same thing as Lani...if she is BRCA+ she would be eligible for the PARP trial (similar to Hercep for trip neg) after primary treatment with another chemo. Also there is a website for triple neg. which might be helpful...
www.tnbcfoundation.org/tnbc/Home.asp
I am sorry I cant be more helpful,
Marcia

Last edited by Soccermom; 12-09-2007 at 08:23 PM.. Reason: wrong url
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