Apr 27, 2011 09:15PM - edited Apr 27, 2011 09:16PM by Faith316
I had a local recurrence. I was orginally dx with IDC (Stage 2B, Grade 3, ER-, PR-, HER2+, 2/8 nodes malignant) in April 2008. Had a lumpectomy, ACx4, 12 weekly Taxol with concurrent Herceptin and then just Herceptin, supposedly for a year. While still on Herceptin and in the midst of 30 rads tx, I developed signs of IBC. All my doctors thought it couldn't possibly be IBC due to the fact that I was still in active treatment for the IDC and had had so much chemo and a huge radiation dose. So they all just said watch it for awhile. It continued to progress and I kept going back saying, I have all the signs of IBC -- hot swollen breast, peau d'orange, rash, thickening skin, flattened nipple -- and it didn't get any better after taking antibiotics, so they finally biopsied it, and I was right. It was IBC.
That dx was in June 2009. They referred me to MD Anderson in Houston and my oncologist there stopped the Herceptin and switched me to Xeloda and Tykerb. After even one dose, I could start to see improvement in the rash. Within a month, the rash was totally gone and the skin thickening and all other signs were so much better. I also had another PET/CT at that time and it showed NED. I stayed on Tykerb and Xeloda for 6 months and then had a uni-mx and another axillary node dissection in Feb. 2010. The path report showed NED and every PET/CT I have had since then still show no sign of mets.
After the surgery, I stopped the Xeloda but still am on Tykerb. I've now been on it for 22 months. My MDA onc says I will stay on it at least until next January (which will be 2-1/2 years of it) and at that time, he'll decide whether to take me off of it or have me continue.
By the grace of God, I have been so blessed and so fortunate to be doing so well as IBC is horrible and often so fast growing, fast spreading and many people have mets by the time they are dx with it.
So --- long story short, yes, I did have a local recurrence but even still, 3 years after my original dx, I am still doing great.
Good luck to you and PM me if you want.