her-2/neu overexpressed and confused

Before I start my question I just want to express my wishes and respect for all that communicate on this site. I am sooo impressed with your bravery and consideration. My wife (41 yrs old and otherwise very healthy)was diagnosed with stage IIIA bc (2-3 cm tumor in left breast with 7 of 16 axillary nodes positive)in 10/03, had a mastectomy and has now had 3 of 4 AC treatments to be followed by 4 Taxol, radiation, and then hopefully herceptin. Chemo schedule is dose dense (every 2 weeks). I'm nervous because although her Oncologist is a caring man I am concerned that he is not familiar enough with all that is on going as it relates to bc and he is not very aggressive. It is through my encouragement that she is on dose dense and he is looking into herceptin. I have read all of the recent messages and want to ensure all is done to prevent a reoccurrence. He is of the mind set that trials are unproven and you want to save some bullets in the gun in case. I therefore have 2 question...am I looking to be to agressive too early and is there anything else out there that anyone would anyone recommend looking into (already looking into the Washington vaccine)? Thank you

Hey Eric,

Sorry you have to be here. My partner, Rachel, was diagnosed a little over a year ago with a 3-4 cm. tumor that was her2+3. After doing surgery, chemo (ac+t as well) and radiation, she is now on herceptin every three weeks. If you write me at melnick@babson.edu I can tell you some more about what we've learned/done in the last year.
Warmly,
jeff

This sounds like my onc (and others from what I have read). I was dx in Nov '02, 10 cm tumor, had pre-surgery chemo -- 4 AC and 4 Taxotere. Then surgery, then rads. I asked about Herceptin and he said "no data to support it" if no mets. Well, now I have just been dx with mets, so I will be getting it on a weekly basis (along with Navelbine and Zometa). I still wonder IF I had gotten Herceptin earlier. But it was probably already in my system, even though my PET scan and bone scans showed nothing. Grrrrr.

Good luck...

Sue

Hi Eric,
I was dx with IIb, 2cm tumor, 1of 27 lymph nodes +
in July 99, her2=3+; rec. 4 AC 4 taxol, radiation, Tamoxifen. 6 mos. later had a recurrence in supraclavicular lymph node and was put on Taxotere & Herceptin x 6 mos, stemcell transplant, then 12 weekly Herceptin (I tried to convince them to keep me on Herceptin, but they said I didn't need it after stemcell). 6mos later Recurrence! So, I would push for the Herceptin now.
Best to you & your wife,
Velva

Hi Eric,
I had a similar dx as your wife's but more advanced. I did unfortunately recurr and am now on Herceptin and am NED. Was your wife's tumor tested for Her2 status using the FISH or IHC method? That should help in your decision as to whether to push for Herceptin now, as FISH is considered a more reliable test for indicating which cancers will respond to Herceptin. Below is a link to the Interesting Articles page of this site, there is a posting by Paul with links to articles which explain FISH and IHC, and contain valuable info, if you haven't already discovered this!
Hugs,
Lolly

Hi Eric: I'm sorry you both have to go through this...I don't want to make things any more difficult for you but feel that it is best to present information/opinions and then let you make up your mind. My Onc felt that the most benifit from the Herceptin was when it was used in conjunction with the Taxol...it was suppossed to make the taxol work better. I have also read that herceptin has a positive synergistic effect on radiation. So if you were going to use Herceptin now I would start it with the Taxol. But...if you are considering entering a clinical trial for a Herceptin vaccine you cannot have already taken herceptin (at least I haven't found any that will accept me because I have already had Herceptin). So you need to decide which road you want to take...I was at StageIIIA, 10 of 20 lymph nodes positive. Had Herceptin in clinical trial with Taxol then for a couple of months after but had to quit because of heart problems. Have been NED for the last year...all scans clear in Dec. Keeping fingers crossed....Take Care, Linda

I recall how my large tumor (about 6cm) shrunk so fast after I'd started on taxol & herceptin. It did the shrinkage much better than A/C alone. I couldn't take herceptin at the beginning of chemo, as it's noted that adriamycin could be hard on the heart. And you already know that herceptin is known for heart damage. Anyway, then at surgery, no tumor was found! I'm still continuing on herceptin though, due to the fact that I was 17 out of 18 nodes positive. Also, doctors say that most tumors shrink LESS than 50% of original size, so they were pleasantly shocked at my shrinkage rate.

Hi Lolly,

I'm sorry that you had a reoccurance but I'm thrilled to hear that you're NED. My wife's was 2+-3+ according to IHC and samples were just sent last week for FISH so we'll find out for sure. With herceptin as an option I'm now not sure which way I would prefer the results to come back!
I've seen alot of info but will check out the link that you've attached in case I learn something new. Thanks for your thoughts.

Warmly...Eric.

Hi Sue,

I know the system is in place to protect everyone but sometimes the system stinks! I hope the herceptin helps.

Eric.

Hi Velva,

I will make sure to push for the Herceptin! Sorry you have to fight the mets.

Best regards,
Eric

Hi Linda,

Appreciate the info. I've read the same about combining the herceptin with the taxol but my wife's doctors response was that proven for mets only and that the only real option was alone. If I can find any data supporting the combo for earlier stage I'm going to push harder.
I'm keeping everything crossed!

Best Wishes...Eric.

That's great! Sounds like the herceptin was a godsend for you.

Eric
I was originally diagnosed in early 2002 with 0.7cm invasive ductal BC...all lymph nodes were clean. Had a mastectomy and no further tx was recommended even though I was ER PR neg and Her2 3+. 9/03 I found a supraclavical lump, and then was diagnosed with metastatic BC. I have been on Herceptin alone every 3 weeks since then and the tumor has shrunk to almost nothing. I will have to be on Herceptin 5-7 years or longer if it works. Very minimal side effects...I wish I had been able to get it when I was diagnosed to begin with, but it was only for people with positive nodes...I think it would have prevented what I have now. My treatment is at a large Chicago Hospital and they seem to have the latest on everything. Good Luck to you both. Keep Positive, it is the best medicine!!!

thank you and I'm glad you're doing so well.

Hello Eric,
You'll find a tremendous amount of support, wisdom, information & comfort here from some amazing women.Your wife is lucky to have you taking such good care of her.I hope that you & your wife will pursue participating in a clinical trial-research is our only path to a cure.
I was dx'd in may'02, 33 yrs old, Stage IV at primary dx (liver mets).I tried herceptin + navelbine w/no response, then a clinical trial until stable for a short 3 weeks, then Taxol + Herceptin for 14 until NED!I just celebrated 4 months since my last chemo & the return of my hair after a year of being bald!I was on tx for a total of 49 weeks.
I've been on weekly Herceptin since I finished chemo & my onc said she's somewhat surprised how well I'm doing on Herceptin alone...especially since I had disease progression the first time I tried it.She said this proves that there is still so much that we don't know about this drug and how the body responds.This is why I believe we have to continue to be vigilant and contribute to research!
I know you've discovered that you have to be your own biggest advocate-it doesn't seem right, but that's just the way it is.Susan Love's book & website are great sources for the most current treatment options.Another option is to switch oncs-my onc treats breast cancer ONLY-that way she focuses & stays educated about breast cancer specific treatment ONLY.
I hope this info is helpful.Will keep an eye out for your posts & your wife's treatment.
Keep the faith!
Jessica

Hi Jessica,

You're right, I am amazed and impressed by the women on this site, as well as women as a whole. The support systems that are available and the focus on this disease is all because of the strength and diligence of women like you. I know who is really the stronger sex (but don't tell my wife)!
It's funny but I have found Susan Love's site to be all that helpful but I guess I'll have to go back and take a closer look. This is the site that I have found to be far the most useful.

That's fantastic news that your doing so well on the Herceptin. We asked about particpating in Herceptin trials but was told by her Onc that the dose dense makes her ineligible. I'm planning to ask again since I really want her to get the herceptin along with the taxane, since it seems to be more effective that way. Her Onc, though, has made it clear that the insurance company may make it tough there. I hope not since I'm convinced that it's in my wife's best interest.
Glad to hear that you have a breast specialist...I looked for my wife but couldn't find one that was recommended outside of Sloan and they're out of network and my wife didn't want to travel that far anyway.

Thanks for responding and keep surprising your Onc. Eric

Was there ANY sign of past cancer on pathology?