IBC Recurrence after 2-1/2 yrs

cagney

I received results of a lymph node biospy on Thursday that came back positive for BC cells. I will be having a head MRI tomorrow and a full body bone scan Tuesday. I see my medical oncologist on Wednesday afternoon to set up chemo protocol, etc.

Can anyone who has had an IBC recurrence let me know what chemo they were put on? I was on Taxoterre/Carboplatin/Herceptin two years ago. I've been on Femara since I finished chemo. I had a bi-mx plus 33 rads last time around.

I'm just curious what others with an IBC recurrence were put on. Did you go back on Herceptin again (if you were HER2+)? Did you continue with any post chemo oral drugs while undergoing new chemo?

Any info I can get will be most appreciated. Thanks.

Dar

Faith316

My initial dx was IDC in April 2008.  I took AC x 4, Taxol x12 with concurrent Herceptin and then the Herceptin was to continue for a year.  I also had 30 rads treatments.  Two months after finishing Taxol and while in the middle of radiation, I starting having IBC symptoms ---- hot swollen, enlarged pores, flattened nipple, rash.  All the docs said it was most likely radiation side effects since I was also so burned and blistered.  I suspected IBC and said so but they all did not think it was IBC.  Finally had a biopsy done and I was right, it was IBC. 

My local onc. had never had a patient recur after IDC as IBC while still in active treatment.  He sent me to MDA.  They stopped the Herceptin (I had been on it for 9 months by then) and switched me to Xeloda and Tykerb.  After one day on the new drugs, I saw improvement in the rash.  Everyone said -- yeah, right.  Wishful thinking on my part, but I really did.  After 3 weeks, the rash that had been there for 6 months was totally gone and the thickening and other symptoms were greatly improved.  I had a PET/CT one month later and it was all clear.  So, Xeloda and Tykerb did what Adriamycin, Cytoxin, Taxol, Herceptin and radiation could not.  Kicked the cancer's butt!  Good stuff in my opinion.  Worked for me. 

I have been scanned 3 times since then and I have now been in remission for a little over a year.  I took Xeloda and Tykerb both for 6 months and then stopped the Xeloda but am still on the Tykerb and will be indefinitely.  

Maybe ask your doctor about X and T?  Good luck.

LynnB

HI Faith316,

I have just been diagnosed with recurrence and the oncologist doesn't know what treatment. What was your exact treatment and are you you still NED. Thanks! 

chester2010

I had skin and bone mets diagnosed earlier this year.  I'm on Xeloda and a monthly infusion of Pamidronate for the bones.  The Xeloda cleared up the skin mets almost immediately but I have a very bad face rash each time on the 2nd week of the Xeloda.  My cheeks look like a clown's!

Good luck and keep in touch.

Kathy

chester2010

PS:  I'm sorry that you have this recurrence.  Cancer sucks.

Faith316

Lynn,

I am so sorry I did not see this post earlier.  I don't know if you are still reading this thread or not.  But, to answer your question in case you are ........

My IBC started while I was on Herceptin and also during my radiation.  The Herceptin was stopped (I had been on it for 9 months at that point) and I was switched to Xeloda and Tykerb for 6 months.  After the 6 months, I had a unilateral mastectomy which showed no signs of cancer.  That was in Feb. 2010.  I am still just on the Tykerb and have been for 26 months now and yes, I am still NED!

How are you doing and what treatment are you on?

lollypop59

hi i am new to the site my herecptin finishes jan 3rd i had a biopsy two weeks ago, confiming i a have reccurance in the skin, diagnosed last sept 2010.