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Old 03-30-2012, 08:53 PM   #1
lk1
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Re: IBC after initial dx of IDC?

Hi YanYan,

I was first diagnosed in 2009 with HER+++, ER/PR-. I had mastectomy, ACTH chemo and radiation. While on Herceptin, I noticed a very flat, pink rash on my reconstructed breast. EVERY doctor ( onc, surgeon, dermatologist, plastic surgeon etc) said it's not cancer. Onc sent me to a dermatologist for creams, antibiotics etc. I alone kept asking for a biopsy, and that's when I got my recurrance. Needless to say I fired my oncologist and since Jan 2011 go to Memorial SLoan Kettering. They did NOT recommend doing any surgery to remove skin or the reconstruction. They put me on Xeloda and Tykerb, and within a couple of months the rash faded. I am still on the tykerb and herceptin doing ok. I also still do the Herceptin every 3 weeks.

Maybe it's good to get a second opinion..There certainly is hope.
Wishing you all the best to you

-Laura
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Old 03-31-2012, 08:15 AM   #2
yanyan
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Re: IBC after initial dx of IDC?

Thanks Laura! There seems to be a debate on how to treat isolated skin mets. I am glad to hear that tykerb and Xeolda are working for you. Is herceptin part of your treatment regime for the recurrence? I hope the chemo drug I am getting will be efficiently delivered to my radiated breast. Did the doctor at Sloan tell you why you are. Of getting the big chemo and why they don't recommend surgery? Thanks
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 03-31-2012, 11:22 AM   #3
jellybean
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Re: IBC after initial dx of IDC?

I am so sorry to hear of your recurrence.

I believe your oncologist is wrong on the adriamycin front. Typically, adriamycin IS effective for Her2 positive breast cancer. Some, like Dr. Slamon, do not recommend it for initial treatment because TCH has been shown to be as effective or almost as effective as AC followed by TCH without the toxicity. This is not to say that you should be on adriamycin now. I just wanted to clarify this point.
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Old 03-31-2012, 12:05 PM   #4
Becky
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Re: IBC after initial dx of IDC?

I agree with Jellybean. Adriamycin actually improved the odds of Her2+ women prior to Herceptin being available. It works well on Her2+ women, especially if your cancer is also TopIIA positive as well (not a common test but about 1/3 of Her2+ women are TopIIA positive as well).
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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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