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Re: IBC after initial dx of IDC?
Dear her2 sisters
The past week has been busy trying to figure out treatment plans and seeing doctors. Thanks to all of you for sharing your treatment regime and response. I put my questions together and my oncologist listened. He will put me on tykerb and Xeolda. The decision was made last Tuesday and I am still waiting for insurance to approve tykerb.hopefully next week I can get started.
I asked about dose dense chemo since the local recurrence in skin demonstrates similarity as IBC that spreads via lymphatic systems. He explained dose dense is usually given at the initial diagnose. He also explained my recurrence is not considered IBC because my initial dx was IDC
He decided not to give me abraxane because I was already given taxotere and progressed. So the idea is to use new drug on me. He also said the the Xeolda and tykerb is a great combo. I have read many positive things about it clearing up skin mets. I hope this will work for me. I am also er/pr weakly positive so down the road I will be on hormone therapy. I disagree with this but it is not the prime concern right now.
I will have another mastectomy to remove expander and skin. So I will be flat for at least 2 years. Although skin sparing has been proven just as eff as the non skin sparing, tiny cance cells sometimes does hide in skin. My recurrence was exactly where the cancer was. Had I been given the option again I still would not know. It seems every approach has its benefit .
Radiation will be reserved for future but not now. I got a good dose
Of radiation so my radiation oncologist would like to save the weapon for later if I have a chest wall recurrence.
I hope no one has to go through what I have. Just wanna share my treatment plan with you all as I myself find knowing about other peoples treatment options really helped me!
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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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