"late" herceptin gals

dberg · 05-31-2007, 06:40 PM

I guess this is what I get from not being a regular member anymore on the boards. I posted on BC.org and now here, which I rarely do. Seems like only the regulars get any responses.

How are all of you doing that received "late" herceptin? You know who you are...the 2005 news about Herceptin broke at ASCO and you were within one year of finishing chemo. I never see any posts from some of the familiar girls from that era.

Is anybody out there?

Becky · 05-31-2007, 07:17 PM

I started Herceptin after the 2005 ASCO meeting's news on the Herceptin trial. When I started I was 4 months past my last chemo (had dense dose AC followed by dense dose taxol) and 2 months past radiation.

Since I started "late" I was able to convince my onc to give me 5 extra every 3 week treatments to take me to 2 years from my surgery (the most critical time for recurrence) and so I actually got almost 16 months of Herceptin.

I wasn't really "late" in starting though - not if taking the Hera trial into consideration. In that trial, I would have started just about right on time.

Let me know if you have any questions. I am doing very well at this point.

romo9 · 05-31-2007, 07:33 PM

Hi! I started herceptin after finishing chemo and radiotherapy. I have actually been on it for 2 years now finishing this month. I was diagnosed in oct 2004 with a 3mm tumour and 18 positive nodes. Her+++,but no spread. Still NED.
Hope this helps.ROMO

DonnaD · 05-31-2007, 07:53 PM

Sorry you feel only regulars get responses. Did you know the site has encountered problems for almost two weeks now? They are trying very hard to get it up and runninig again.

There is so much knowledge here. Don't give up on us!

PS - I am not a "late" Herceptin. Finished A/C the beginning of Jan. and started Herceptin and Taxol the end of Jan.

RhondaH · 06-01-2007, 02:48 AM

and am doing fine. Sweetie, I don't pick and choose who to respond to, I just respond when I feel I have something valid to say so, please don't feel that way. As far as not seeing some of the others, honestly I know of MANY that have gotten on with their lives and stay away from the boards (I am hoping to get there, not TOTALLY, some day too). Take care and God bless.

Rhonda

newgg · 06-01-2007, 03:14 AM

Am also in the "late" herceptin group. Talked to onc after the conference and started 2/06. That was 12 months after being done with chemo. Am triple pos and wanted to fight with everything available. Finished the year of every 3 weeks in 2/07 and doing just GREAT ! Had concerns about a very painful hip and did the entire batch of scans and MRI of the area. Was deeeeelighted to be told that I had arthritis and bursitis in there. Got to celebrate last month....3 years out!!
Hugs, Bonnie

Barbara2 · 06-01-2007, 11:34 AM

dberg, I had talked many times to my onc about herceptin after finishing my chemo. He wanted to wait until the Herceptin trial results were released in May 2005. As soon as the information came in, he agreed to let me try Herceptin.

Did you receive "late" herceptin? Hope you are doing well. I'm always interested in hearing from the "late" herceptin people, too, so it's nice to see it being discussed again.

Barbara · 06-01-2007, 04:45 PM

Hi:

I started herceptin about six weeks after finishing my Taxol - that was in June 2004 and I am still NED. I was 2B, 1 positve node, vascular invasion, 8/9 on the Nottingham Scale with a grade three, 3.5 cm tumor. I actually had two years of Herceptin at my request.

Barb

Adriana Mangus · 06-01-2007, 07:59 PM

Is leukine for red or white low count? I am a little anemic, not to the point that I have need it to be on anything now, just getting ahead of the game just in case. What's the difference. I do not trust those shots for either one red or white low count. What whas your experience?

Susan Rankin · 06-01-2007, 08:36 PM

Hi,

I was diagnosed in July 2004, started chemo in September 2004, Adriamycin x 4, Taxol x 4 and Cytoxan x 4, 33 Rads, Started Weekly Herceptin in June 2005 for one year, Femara, finished Herceptin June 2006, NED, three years out in July 2007. I am thankful I was able to get Herceptin. Doing well.

Susan

RobinP · 06-01-2007, 09:38 PM

I had really late H. However, I was only treated intially with CMF chemo and I did have a positive node. So the late H. made sense, especially since an expert her2 oncologist advocated it for me. Well, I'm still NED five years out now.

Merridith · 06-02-2007, 02:09 AM

I was a control on the HERA trial so I was only offered Herceptin after the trial results were known.

I was diagnosed in October 2003.

I ended up getting 1 year of herceptin nearly two years after the original diagnosis. I finished my last dose in December 2006

So far, I am NED.

Merridith

Marcel · 06-02-2007, 05:53 AM

I'm also a "late Herceptin" gal, with almost the exact same timetable as Merredith. Diagnosed Oct. 2003, (stage IIIa, 3+nodes) completed chemo in May of 04 (dose dense AC/Taxol) followed by radiation. Had to mount active campaign for Herceptin alone, but finally won approval in Nov. of 05 and completed one year later. So far so good!!!!

Christine MH-UK · 06-02-2007, 12:37 PM

Started one year at the beginning of October 2005 because I was extremely high risk (ER-,PR-,9/18 nodes, diagnosed within six months of having a baby which is an adverse risk factor). The only thing I had in my favor was being grade 2 and even then my oncologist pointed out that the cancer acted like a grade 3 (great). My oncologist advised late herceptin because I was his highest risk her2 patient needing herceptin.

I am doing fine.

Joannie · 06-02-2007, 01:41 PM

I was diagnosed in April 2003. I never received late Herceptin, much to my dismay. I am however, enrolled in the Tykerb, TEACH trial as of about a month ago. I believe that I have received the "real" thing vs. the placebo. All is going well and I'm greatful to be enrolled in this trial.

Joannie

momdeeco · 06-02-2007, 03:17 PM

I received Herceptin "late" because my oncologist said I didn't need it. (have since switched oncologist and wish I would have done it sooner.)After reading more on this site I decieded to seek a 2nd and 3rd opinion. Started Herceptin 6 mo. after chemo, and only received 6 months due to some heart issues. Hoping that is enough.

chrislmelb · 06-02-2007, 04:58 PM

I was a control on the HERA trial so I was only offered Herceptin after the trial results were known.

I was diagnosed in Sept 2003.

I ended up getting 2 years of herceptin 18 months after chemo finished(8 FEC). I will get my last dose in November 2007. So that means I got the Herceptin 26 months after diagnosois.

So far, I am NED.

Very good thread to read. So far we have all been lucky.

Christine

janet/FL · 06-02-2007, 08:53 PM

I have been staying away from the breast cancer groups. I have been busy with other things and was kind of hoping just to forget that I could ever have a reoccurance. Like I am busy and I don't have time for mammograms and doctor appointments. But I so love the people on this list and how supportive they are so I check in when possible and post if I feel I have anything to contribute. I miss those that are no longer with us for whatever reason. And those that we have lost to this nasty disease leaves me sad and mad.
I was stage 1 at time of diagnsis in 2004 and could not get Herceptin until August of 2005. I am ned and plan on remaining this way. My signature gives the treatment and times I received it.

Jean · 06-03-2007, 06:04 PM

I started chemo TC and H May 2006 one year after dx. Had to fight hard for
it....so far NED.....I am very glad this thread was started....also glad to read
everyone is doing so well...

Robin...had to smile about your 5 yrs. Yahooo....

God Bless,
Jean