Length of Herceptin treatment

[NancyRei]

Hello everyone!

I am a new user to this board, but thought I would ask the question to those of you who have a knowledge regarding Herceptin.

My question is, what is the normal length of time that Herceptin is given? I am stage 1 early breast cancer; 2cm tumor with central comedonecrosis; no mets; ER-PR negative and her2 strong positive according to the fish test. Second episode of breast cancer in ten years, opposite breast.

My onc has offered me six treatments of Herceptin given every three weeks. She told me it is only being given to me as "maintenance." But, I have seen on this site and on others that it is usually offered for 1 to 2 years. Does anyone have current information as to what the length of time for treatment is normally given for someone in my situation?

My onc. is hard to talk to and difficult to ask her any questions. Usually questions are being answered over her shoulder as she is walking out the door. Her office is run like a "factory"...make you co-pay first and don't rock the boat! She was recommended to me by my surgeon, but I was warned by him to do everything she says, and not to question what she recommends! What a great confidence that instills in a person that is already frightened by the diagnosis.

Any response will be greatly appreciated! By the way this is a terrific site. God Bless you all!!
Nancy

[RhondaH]

ER/PR-, Grade 3, No nodes, 1.6cm tumor, WEAKLY Her2+ and have been on Herceptin every 3 weeks since 8/18/05 (and will be for 1 yr). I would get a second opinion.

Rhonda Hoffman

[Maryanne]

Nancy,

I definitely agree with Rhonda, please get a second opinion! I am also stage 1, ER/PR neg, node neg, 1.1 cm. Did 4 A/C, 4 Taxol. 36 radiation, and will be on Herceptin for a total of one year.

Maryanne

[CherylS]

Stage 1, ER+, HER2+++, 1.7 cm, grade 3 4 AC, 12 weekly Taxol plus Herceptin, Herceptin continuing every three weeks for one year. Also had double mas. and ovaries out to be on Arimidex. Get a second opinion. It isn't "maintainance" when it's your life. Good luck.

[Vicki Z]

Hi Nancy,

I'm so glad you asked this, and it's great reading everyone's condensed responses. I'm in Calif. and was diagnosed in Dec., 2003 with 1.5 cm. tumor, no nodes, and strong her2+++. Had a skin-sparing mastectomy in Jan., 2004 and lat-flap reconstruction along with FAC and then Taxol, Carboplatin and Herceptin weekly for 12 weeks (finished in Aug., 2004). I wish I'd been given it longer, but so far, so good.

Others who took it for less than a year: I do know a woman who is eight years out and had one pos. lymph node and she took Herceptin for 16 weeks. Another woman had eight pos. lymph nodes and took it for 16 weeks and has had no recurrence and that was four years ago. Both are er-. I was told by my onc. that Genetech set the one-year time frame when it came to the clinical trials, but word is still out as to whether it should be longer (two years) or shorter. If any of you have more information on this, I'd like to hear more on the topic. I'm really glad we've got each other!!

Vicki Z

[Christine]

Marcy,
Ask your onc to extend the Herceptin Tx for 1 yr. every 3 wks. It is an easy chemo alone, but you may want to ask for the first 6 months to combine it with with Taxol, a more powerful combination.

If you are not comfortable with your oncologist, you should seek a second opinion or an oncologist that you feel more comfortable with.

Remember your life is at stake and you have to fight for it.

Hugs
Christine

[JoanM]

Hi Nancy:

I am Stage 2, Grade 3 tumor. 2.8 cm, lumpectomy, no lymph node involvement, er-pr- and Her2+. have recently completed 6 rounds of chemo, 16 rads and my onc has put me on Herceptin and told me that I can expect to take it from one to two years. I was told to think of Herceptin as 'insurance' against recurrence, and that there is no way of knowing if Herceptin is effective - apart from the fact there is no relapse or recurrence.
Best Wishes,
Joan

[Edith]

I was dx last Feb. 2, surgery Feb.10. mine was 5.2 cm. However they weigh it, I came in at 820, which is considered huge they tell me. I had two tumors, one on top the other. Mine was magliant breast cancer, aggressive/invasive. All 17 removed nodes negative. Her2new 3+. I did 4 trtmts-3weeks apart of chemo, then 6 weeks radiation, 5 days a week. With the radiation I came out with 2nd and 3rd degree burns which netted me an emergency room visit.

Now for "insurance" they want me to do a "herceptin" program? No thanks. The chemo left me still trying to walk, and it has also been discovered that chemo did 10% damage to my heart muscle. I am doing a daily pill for that one which is treatable and reversable.

In researching Herceptin, 1 in 20-30 women have major heart and other serious heart/liver problems. My onc. wants me to do this program under constant monitoring for 1 complete year, then do the program for the following 5 years. No way! We need a plan B for this one.
Comments/suggestions? Thanks. Edith

[Geralyn]

I am stage 2 High grade tumor of a lymph node under left arm 5 cm. Diagnosed September 2004. Her2 +3 / Estrogen negative, progesterone 10%. Axillary dissection of 14 nodes negative. All other tests negative. Dose dense A/C times 4, Taxol times 4. Rads times 35. Arimidex daily. Herceptin every 3 weeks for 17 treatments. Last treatment on 11/23/05 Dr. said she expects to get results of outcome for a two year herceptin trial in May. (I think she is mentally preparing me). PLEASE find a Dr. you are comfortable with.....I interviewed 4 in a week to end up with my beloved Dr. at Vanderbilt in Nashville. Blessings, Geralyn

[sassy]

Stage II, Grade 2, 5 of 14 nodes positive, left mast, 4 dose dense a/c, 10 taxol/herceptin, continuing herceptin for balance of 1 year, 33 rads.

Wouldn't consider not having herceptin.

Sassy
________
Magic Dragon Dispensary Santa Barbara (http://www.dispensaries.org/)

[Ginagce]

Stage III, er+, her+++, lymph node involvement, bilateral mastectomies, chemo a/c then taxol. Now taking herceptin for 1 year..."give or take" as my onc says.

As the others suggested, I would get a 2nd opinion.

Additionally, I am concerned that your primary caregiver in this battle against cancer is running a factory and not more communicative and supportive with you. We need our Docs to be our partners in this fight, not authority figures that pooh pooh our questions and concerns and rush us out the door like school children being dismissed. I had a breast surgeon who acted like that, I found another.

Hopefully, if this Onc cannot provide you with a level of comfort, by getting a 2nd opinion, you will find someone who does.

Best of luck to you
Gina

[anne]

Hi there,

I have to say, be your own advocate. Do question your onc. or find someone you can question. It is your basic right. No one care about you as much as you do. This doc doesn't sound like the easiest person to get along with. My mom's onc is top 5 in the world and I have no problem questioning him or telling him if I don't agree with something he's got to say. I think it is well within your right to get a second opinion.
Good luck,
Anne

[NancyRei]

Thank you all for your kind replies. It has really helped me make some important decisions about a second opinion.

Just FYI though, I did have chemo. Taxotere - 6 treatments, which ended in January 2005. I was not offered the Herceptin until May, and had my first infusion last week. No rads, as I had it with the first bout of Breast Ca ten years ago. And, the dosage of Herceptin I am receiving is 6mg/Kg. My Onc told me it was a larger dose than recommended, therefore I would not need to continue treatment of Herceptin longer than the six doses she offered. I weigh 140 if that makes a difference here, I'm not sure.

Once again, thank you all for you help and kindness. You are all a gift!

Best wishes to everyone of you!!

Nancy