Lets do a roll call on adjuvant Herceptin trial

Thank you Sassy for your positive reinforcement! Right now I'm inbetween infusions and feel fine. But I'm not looking forward to the next treatment.

Barbara, Good luck with your decision. I was back and forth so many times...even now, after two Herceptin treatments. No one knows if Herceptin will help us "late bloomers". I thought I was the only one starting so late, but through this website, I have learned I am not alone. After reading the great Herceptin results, it seems to make sense that it would help any Her2 person avoid recurrence.

Helping me make my decision in the middle of my dilema, was a friend who unfortunately had a recurrence 12 years after her original diagnosis.

Even though I am outside the trial results, I hope other patients can learn from my Herceptin decision. I believe we will see more and more late Herceptin starters.

My BC/BS insurance is paying for Herceptin and I had no scans or restaging. The oncologist's office applied for me and the next day the insurance approved it.

Linda

Ok, Girls...smile..I HAVE to put input into this thread...

I really, honestly, truly, positively can tell you...it MAKES no difference HOW MANY MONTHS you are out from treatment...what you took...how long you took it...blah, blah, blah...what matters is DO YOU HAVE HER-2??? Is it active NOW??? Is it, even as we type to each other rising in your blood stream, just lurking there ready to set off all sorts of nasties???? I just can't get my head wrapped around the fact that apparently, the majority of the onc's out there are not even regularly monitoring your CA 27/29 and serum Her-2 levels together. The bottom line, though, is if YOU know at any point during these nightmares we have all experienced that YOU ARE HER-2 positive, you should be getting HERCEPTIN...period dot. I can not make it any plainer. For folks like us, right now, it is better than sliced bread. Still, I don't recommend over-doing a good thing. INSIST that your numbers are charted regularly. Take only as much Herceptin as frequently as necessary..too much can be damaging. Remember, so what if your markers were taken 5 months ago when you stopped CA or whatever and were "normal" . One number here or there means next to nothing...The CA 27/29 can be in the normal range, less than 38 and your serum her -2 can be over the moon...trust me...I have found out the hard way and suffered many needless mets because of this (original DX '97, mets and Herceptin alone since '99). Unless your CA 27.29 is consistently hovering around 9 and 10, GET CONCERNED...your serum Her-2 is worse and if you have enough her-2 receptor filled cells to be dumping the protein into your bloodstream, you have to get moving. You can drag this illness out many years...but YOU MUST STAY AHEAD of the her-2 protein over-production...remember HERCEPTIN is NOT a cure, merely a control...Think of it like insulin for Diabetics...As long as the diabetic person takes adequate amounts of insulin, he or she will put off the ravages of this horrible disease for many years...but if they don't take their insulin....regularly...well, we all know what happens...Tell your oncologists that where herceptin is concerned you want to follow the Insulin model. Fortunately, no need to take blood several times a day as many diabetics are forced to do...a simple blood test PRIOR to each dose of Herceptin is more than enough. DO NOT have the blood draw immediately after HERCEPTIN as sometimes the assaywill pick up the herceptin as her-2 and your numbers will LOOK HORRIBLE!!!...ALSO remember ONE number does not mean much by itself...it is when the numbers are charted OVER TIME that you begin to understand what is really going on. FOLKS, this is the 21st century...THERE IS NO NEED TO GUESS...as far as the difficulty being forceful with the onc's (who sadly don't KNOW what do in many cases...sighhh, not their fault, though, and many do the best can they can...) just remember this one thing: IT IS YOUR BODY, the ONLY one you will get in this dimension anyway, and it is YOUR LIFE. Gina, over and OUT...smile.

Gina, i think you are confused. These people who are discussing taking Herceptin have no mets at this stage i.e. they are still early stage BC. They are trying to decide whether to take it now, way after their initial chemo. i too am faced with the decision so i am very interested in the comments.
Also the CA 27/29 and other levels come into play most when you have mets and are screened three monthly.
Take care

I completed my chemo Nov 2002 and I just started Herceptin last week. I consulted 4 oncs - 2 in the US and 2 in Canada and they all agreed it might help and since I am ER/PR - this is all I have.

I have to pay for it in Canada, but I know I can't take it with me!

jjfromcanada,
What stage were you in 2002? Were you lymph node positive or negative?
Thanks for sharing your information!! It helps.
BarbaraL

I think Gina was trying to say to push your drs. to prescribe herceptin, regardless of node positive or negative. If you're Her2 then you should be on Herceptin regardless of stage, i guess to prevent mets in early stages !I am pretty sure thats what she was trying to say ..

BarbaraL,

I was stage 3b. I had two primary tumors. Larger 4.5 cm. ER/PR-. 4 of 10 positive nodes. And Grade 9.

I had CEF and 25 zaps of radiation.

I even pushed for another round of chemo back in 03. But couldn't find an onc who would do it. And only knew of the Herceptin trial from a friend of my sister's in the US.

I asked for it then and got denied it too. The results of the trial have changed so many minds.

But I really believe the benefits are there just not measured by a trial. The oncs I talked to felt those benefits outweigh the risks.

I had my loading dose Aug 22 and for the first time since I got my pathology report I really feel hopeful. Cost of Herceptin, $70K. Feeling hopeful, priceless.

[SusanDail]

I am participating in the SWOG N9831 Herceptin Trial through Swedish Hospital in Seattle. I received Herceptin post Taxol and am halfway through my weekly infusions. I was diagnosed in May 2004 as Stage 2B, ER Positive, Her2+Nu positive. No side effects other than being very tired after treatment. No change in MUGA score.

[amya]

I was diagnosed in March 2003 stage IIb...2.5cm and 3 1cm or less with 2 positive nodes HER2 +++. I was in the control arm of the Herceptin study. I received AC x4, Taxol x4 and 7 weeks of radiation. After the study was stopped because of positive results, I asked if I could/should receive Herceptin but was told by my Onc. that I was outside of a year, so the protocol wasn't for me to receive any. I'm wondering if anyone out there is getting herceptin even though they were outside of the year cut-off, or if there are any studie looking at benefits of adding Herceptin to other women like me. At this point I am NED.

[mamacze]

Hi Amy!
How nice to see a friend posting on this wonderful web site...welcome welcome welcome to our discussion board!
Your question is such an important one, I suggest you post it as a separate thread so it gets the attention it deserves.
I am not an expert in anything; but I can point you to some web sites that may be helpful; for example check out;

http://www.cancer.org/docroot/NWS/co...ast_Cancer.asp


http://www.cancer.org/docroot/NWS/co...eakthrough.asp

http://www.nci.nih.gov/newscenter/pr...mbination2005/

http://www.medpagetoday.com/Hematolo...Cancer/tb1/947

They all seem to point toward the use of Herceptin to prevent reoccurrance; you may want to ask your oncologist.

Good luck!
Love Kim

[mamacze]

Hi Amy,
Also, check out the "early stagers?" discussion thread; especially SandyBB's entry on 9/30; it seems relevant to your situation...
Love,
Kim

[amya]

Thanks for recommending the site. It's great to have so much information in one place. I'll check out the links you provided. Being in the control arm of my study at the time that I was has put me in somewhat of a void. I'm now trying to figure out just what the best course of action is and what options are available. Thanks again.

[chrislmelb]

Amy, i just signed and posted my documents to receive herceptin and i finished my chemo May 2004. I am on control arm of HERA. My onc basically said if it helps lots of other HER-2 situations it could help in mine. They don't know.
I am in Australia.
ER/PR+ her-2+++ on arimadex, had mastectomy, 3 nodes positive, stage 2B, FECx8.
Christine

I was in the control arm of -N9831 . Stage IIa, one node involved, 1.4 cm tumor. I am her2+++, er+ . I had 4 a/c followed by 12 weeks of taxol. I am now on Arimidex. My chemo was completed 10/04 and I will start Herceptin next week one year away from the last taxol. Planning on every 3 weeks for the next year.
Pat

[Laurie61]

I was diagnosed in May 2001 with Multifocal infiltrating ductal carcinoma, Her-2neu and ERA an dPRA positive. 2 positive nodes. I had a mastectomy followed by 6 months of adriamycin, cytoxin and taxol, I was accepted on a herceptin arm which combined the herceptin along with the taxol and continued weekly for a year. I had muga scans done to check for heart damage, but found nothing. I opted to have a mastectomy on the other breast as well, only to find it was not cancerous, but had questionable tissue, good thing I had it removed. Have had reconstruction and am very happy with the results. I have taken tamoxifen for 3 years and about a year ago changed to arimedex. I am approaching 4.5 years cancer free, I so greatfull to have received the herceptin, I believe it has made a difference in me having my health back.

I am new here. I was diagnosed in December 2003 with multifocal IDC, primary tumor 2.4 cm, 2 much smaller, Her+++, ER/PR +. Stage 2b. I had a sentinel node biopsy before any treatment and they found involvement in 2 nodes, a small level in one and a microchip in the other.

I got into one of the BIRG studies at Dana Farber, where you were guaranteed herceptin. I ended up in the herceptin/navelbine arm. I had 12 weeks of that, and then a mastectomy. They found that the herceptin/navelbine shrunk my tumors considerably but since they were multifocal and in different quadrants, my surgeon said she felt a mastectomy was necessary. That was probably the best day of my life without my even knowing it. Mastectomy in June, 2004, with axilary node dissection (no more nodal involvement), 4 courses of A/C, then started radiation - 35 treatments, and back to herceptin, once every three weeks, for 14 more weeks. Started tamoxifen in December of 2004 but (THANKFULLY) my oncologist switched me to arimidex in January of 2005. I had a bad reaction to the tamoxifen, and at the same time the San Antonio conference was reporting the results of the tamoxifen vs. arimidex studies.

Finished the herceptin in June of 2005.

I thank my lucky stars that I ended up at Dana Farber and that I decided to get into the clinical trial that GUARANTEED herceptin. I did a lot of research ahead of time and decided I wanted herceptin no matter what.

What I find so terrific is that for the longest time being HER+ was considered a terrible thing, and now with the great success of herceptin, women who are not HER+ sometimes feel cheated that they are not candidates for herceptin. Crazy world. But we are a very lucky group at this point in time.

Having a prophylactic mastectomy this coming Tuesday. Am not high risk but decided to do it for cosmetic purposes. My reconstruction options are limited due to radiation and I decided that I would like to be "even" rather than have different size breasts if I happen to lose or gain a little weight. The bonus is that I will not ever have to go near that damned mammogram machine again!

God bless us all.

Sorry. I'm in the wrong thread. Mine was NEOadjuvant.

[annpurdie]

I was disagnosed in February 2005. I was stage II, lymph node negative, and turmor size 3.2cm. I was estrogen receptor positive, and pre-menopausal. I went through 6 chemo treatments that just ended in June 2005. Now I am considering the herceptin treatment on a weekly basis for a year. I am to begin treatment on October 17, 2005. Please keep me in your prayers. I am strongly encouraged by the bulletins that I have read so far.

[Laurie61]

Ann, Our prayers are with you. If you are finished with the chemo, the Herceptin for me was not a big deal and I pray it will not be for you. I trust you have a port, as it make it much easier for access weekly. I too had Herceptin given to me weekly for a year. That was 4.5 years ago and I am still going strong! Good luck on the Herceptin and our thoughts and prayers are with you.

Laurie

Diagnosed with Inflammatory Breast Cancer 11/03 -Treated with TAC, then double mastectomy [2 of 12 nodes positive], followed by Radiation - NED since 8/04. I am not in a clinical trial, but my onc and I felt that Herceptin might do the trick in fighting a recurrence - so - I began infusion last week [1x every 3 weeks for 1 year] with few side effects. Since I am more than 1 year beyond chemo, I am in an untested group. We're hoping that it will be the magic bullet for me too. Is there anyone out there in my situation?