Have you had a recurrence after Herceptin or are you still NED?

Egal, thank you for sharing your story.

I have a question if I may. Did you have a brain MRI before your chemo,surgery and rads, or after?

Thank you!

Last week I was diagnosed with recurrence in left armpit (axillary) area.  I took Herceptin as part of my treatment plan (lumpectomy, radiation via Mammosite, chemo, Herceptin, and Arimidex) when originally diagnosed with infiltrating ductal carcinoma in 6/06.   I see my oncologist in two weeks for find out treatment plan this time around.

My2boys........ did you have ANY node involement the first time around?

I was originally diagnosed 3/05 with stage 2, 2+ nodes. er/pr-, Her2+   I did 12 taxol with Herceptin, then a year of Herceptin that I finished in 5/06.

I was diagnosed with mets to my liver July, 2010.  The mets  are still Her2+, so I am back on Herceptin, with Taxotere and Carboplatin.

Laurie

No, I didn't do carbo the first time. Just AC, then taxol/ Herceptin.

My cancer was grade 3 in 05, and I don't think it has changed. My onc said that the pathology was the same as before, but didn't specifically mention the grade.

Laurie

I finished Herceptin September of 2006.

My last check up with my oncologist was yesterday.

So far so good.

Laurie... you have a close DX to myself.. I had more nodes......

I am SO surprised you were not dx with liver mets before 2010. Four years after Herceptin stopped. This is unusual and JUST NOT NOT NOT FAIR! I hope that your cocktail will continue to work for a lifetime..... XXXOOO

Anne.. with 2 nodes positive... WHY did they not want you to do rads the first time around? GRRRRRRRRRRRRRRRRRRRRRRRRRRR I would be REALLY mad about now if I were you. i was like you..

I did not want to do rads.. I fought them..... BUT... my oncos would not even give me the herceptin in three week doses UNTIL I said yes to rads. I told then NO... and they told me.... YES.

So... I either did what they wanted me to do... or I find an entire new staff of doctors..... So... I did rads.

Did your doctors tell you WHY they did not have you do the rads two yrs ago???

YOU ARE ON A GREAT cocktail and Tykerb is AMAZING!!!! My dear friends came back... and she is NED now for two more years.. SO I KNOW YOU ARE GOING TO KICK BUTT Too..... just hate that your doctors did not tell you to do the rads........ HANG IN THERE... you can do this too!!!!!!!!!!!!!!!!!!!!!!!!!!!

Completed one year of herceptin June 2008 after AC, taxol, recurrance in armpit node January 2009.  Did 6 rounds of oral chemo, now onco insists I will be on herceptin for remainder of my life.  Had new port installed and have now been going every three weeks for treatment with no end in sight... not sure if this case is recurrance or metastatic.  Since had first pet show hot spot in hilar chest lymph node, onco says metastatic-all tests say clear since that first pet scan... possibly Rheumatoid flare in chest or sarcoid???  History of RA and autoimmune syndrome.  Feel pretty good considering : )  Happy and well most of the time!  But not happy with using herceptin...actually kinda angry about it!

Estepp,

I did not do rads the first time around because I opted for the bilateral mx instead.  It is not too common to have a recurrence after a bilateral mx, but I was one of the "uncommon" ones.  I consulted two different oncologists and went with Memorial Sloan-Kettering.  They were both in agreement that I did not need rads, unless I didn't have the mx.  It wasn't that I didn't want them, it was more like they weren't recommended, so I didn't ask for them.  I'm not mad at all.  In fact I am grateful that my doctors are doing everything they can to prevent further recurrence.  I really feel like I am in the best hands.  It try not to play "shoulda, coulda, woulda" because I can't change the past, so I just make the best of what I am dealing with right now. 

I am almost done with rads, so I'm glad it is behind me.  I am managing with the Tykerb/Herceptin combo.  Hoping it will do the trick this time around......sometimes I am just very tired of all of this.

Thanks for the encouragement.

Anne

jerseymaria, I was wondering why you can't take tykerb or xeloda?  I had bc in 11/08 finished chemo 4/09, radiation 7/09, and herceptin in 12/09. I was feeling fantastic but had a dry cough for a couple months, after a chest x-ray, ct scan, & bronchoscopy, it was discovered my ca was in my lung & trachea! I was shocked. Anyway, I just started taking Tykerb & Xeloda & am  praying it will do the trick. Just curious why you can't take Tykerb and Xeloda? Gail

Hi Mitch and all

Diagnosed June 2007 had chemo first then mastectomy in Nov 2007 followed by rads and completed Herceptin in November 2008. Had my check up with oncologist a few days ago and NED. I also had a CT scan back in March which was clear. My oncologist said that most younger women with my diagnosis and treatment, if they are going to have a recurrence will do so in the first year or so and then the chances of this happening decline.

x

I hope that this Herceptin drug will do the trick for us, i am doing chemo before surgey , my onc told me i will have radiation after surgery, I wanna do doublle mastectomy and i was wondering if u do reconstruction at the time of mastectomy can u have rads on implants????

3daywalker hi ! my surgeon tells me that u can have rads on new boobs but my onc told me to talk to radiation onc and plastic surgeon.I am wonering if the rads can work on implants ??

Any idea??

Here was my dx

3cm tumor.... 1-3 node +.... grade 3..... er/pr- her2+

Update. 8 year survivor of Stage 4 with liver mets.

7 years remission and on Herceptin for life.