Local recurrence after treatment with chemo and herceptin?

trustinGod

Hello

I would be gratful to hear if anyone has had a local recurrence after having treatment with chemotherapy and herceptin and did you have a lumpectomy or mastectomy?

Thank you for reading this and thank you enormously for your reply. 

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.

Faith

trustinGod

Dear Faith

Thank you so much for taking the time to write your reply with your experience. It is most appreciated. Sorry I did not reply earlier but I have just got out of hospital.

If anyone else out there has had a recurrence, I would be gratful to know.

All the very best to you and thanks

LK1

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.

lollypop59

me to had a reccurrance while still on herecptin that does not finished until jan 2011, i am having my reconstruction removed next week and then some more treatmeny after and proberly staying on the herceptin for longer'

OtraVez

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.  

lovetosail

I had TCHx6+Tykerb & mastectomy, a year of Herceptin and had a local recurrence 8 months after finishing herceptin.  A lumpectomy on the recon breast removed the new lump with clear margins.  I now have a course of 35 radiation treatments, plus continue with Lupron + Faslodex.

KeepingFaith69

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

Remember, as i wrote above, I also had a local recurrence after lots of chemo and 30 rads threatments.  In fact, mine started while I was still taking Herceptin and while I was in the middle of radiation treatments.  But, a switch to Tykerb and Xeloda and I have now been NED for over 2 years.  Yes --- keep the faith!

KeepingFaith69

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

Faith316

You are very welcome!

lollypop59

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.

ReadingMama

I had a recurrance as well.  I had neo-adjuvant chemo, ACx4 and Taxolx4, both dose dense.  The herceptin started with Taxol.  I had a lump, then Rads.  For my 6 month follow up, I asked and rec'd a Breast MRI where they found more cancer in the same left breast.  I was still on Herceptin.  I then chose to have a BMX, which ironically was scheduled for the day after my last Herceptin.  However, the Her2 in the recurrance was Her2 negative, which gives me hope the Herceptin was working.