Local recurrence after treatment with chemo and herceptin?

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.

Faith

Hi Girls,

 I also had a recurrance while in the middle of my herceptin. I had a bi-MX ( cancer was in one breast only..DId acth and finished rads. 6 months after the last chemo I noticed small pink marks on my reconstructed breast. 5 doctors said it's nothing, it didn't look like cancer. but after biopsy proved that it was. I did xeloda, tykerb amd herceptin. now on just tykerb and herceptin indefinitey.

I had a recurrance five years later, a second mastectomy,  the same chemo drugs (AC + T), but in dense dose this time.  No rads this time, either. I'm back on Herceptin again, and start Tykerb next week.   My onc is telling me to expect to stay on these for "at least" another year, and  realized that I'm pretty much at peace with that.  

I have being diagnosed with a recurrence and will be having surgery to remove it on Tuesday 29/11/11.

19/8/2010 - Diagnosed

7/9/2010 - Bilateral Mastectomy (one was my choice)

Nov 2010 to February 2011 - 3 cycles of chemo and Herceptin then 3 cycles of Chemo (FEC)

February - March 2011 - 20 rounds radiotherapy

March to now - Herceptin (last one scheduled for 29/12/2011)

I planned a "Yay it's over party" that was due to start with me jumping out of a plane.  That has been put on hold until I get through this lot of treatment.

I am hoping that the recurrence has stayed only in the skin.

I am gutted that it is a recurrence and really scared that it has occured whilst still receiving treatment.

Still keeping the faith though.

Faith316, your helping me to keep the faith.  Thank you xo

hi keepingthefaith, just thought to let you know the bloody cancers back again after three months of having the first reccurrance last sept, i will be going in hospital thurs to have the whole reconstruction removed and the nodules also more skin, and using skin from another part of my body to sew me back up, then chemo after the op i am so bloody scared.