Did Not Have Herceptin

[Maree]

Hello Everyone

I must admit each time i read on this website about the benefits of herceptin i go cold all over. I had a 1.4 cm tmour removed with a mastectomy in March 2003 and then 4 x AC and 3 x Taxol. I am er- pr- and her2+++. I do not have any mets. I did not get herceptin as i was not told about the trials etc until it was considered too late. I must admit to being anxious about my prognosis given the fact that i did not have herceptin. I would appreciate any comments in relation to this. Maree

[Joe]

Maree,

Genentech has applied for FDA approval for adjuvant Herceptin. I should expect approval before the end of the year.

When approved, your oncologist can give you Herceptin.

Regards
Joe

[Maree]

Joe
I live in Australia so i think it may be a bit different here. I also think that most oncs would not want to give me herceptin when it has been two years since i finished chemo. It keeps going around and around in my brain that i really have not had the optimal treatment for my cancer and am therefore vulnerable. Maree

[chrislmelb]

Maree, here is a link to BCNA all about Herceptin. http://www.bcna.org.au/cms/details.asp?NewsID=491

It has been partly approved but they are waiting for it to go on PBS so it isn't $50,000 to $70,000. Here is a paragraph that states how the TGA has approved it in early stage BC:

BCNA welcomed the TGA announcement that it had extended the use of Herceptin to early breast cancer. However, we are concerned about limitations placed on this approval. Herceptin can be used for ‘localised breast cancer’ that is in all tumour sizes with lymph node involvement and where there is no lymph node involvement the tumour must be greater than 20 mm in diameter. This means that the application has not been approved for women with no lymph node involvement and tumours that are less than 20mm in size.

So since your tumor was 1.4cm and if you had no nodes involved, it seems not to meet their criteria. Don't give up though as things can change so quickly. Check out the link.
I'm in Melbourne as you may have guessed. Where are you?
Christine

[panicked911]

maree,

many oncs are prescribing herceptain and insurance compnaies are paying for it w/out first being treated with chemo - you need to explore with yor onc this possibility and the benefits and/or need to do so.
For me it was the best option of all.

Hope this helps,

Susanne

[Christine MH-UK]

I can relate even though I got late herceptin: my oncologist let it slip once that I was his highest risk her2 patient and that's why I was getting it. Oh, great. But then again, I didn't get it within the ideal timeframe and that does trouble me.

I guess it's the problem with all this progress. You read about some great trial for early breast cancer and think, oh why couldn't I have had this five years later when the treatment would have been so much better. Until there's a cure, there will always be something better and some people will feel like they got stuck with last year's model.

If you really can't get herceptin in your situation there are some things to keep in mind:
1) So far, so good. It hasn't come back yet and the longer you go without it coming back, the more likely the treatment has worked. You are over the 18-24 month recurrence peak that people mention.
2) It's not just herceptin that has improved survival among her2s. The use of both anthracyclines and taxanes seems to make a difference. In fact, one Italian study (listed in the ASCO section) even found that, in Italy at least, the her2 disadvantage disappeared when taxanes were used after anthracyclines. Although this was a retrospective trial, the PACS01 study also found that taxanes made a difference.
3) One Harvard oncologist at least believes that deaths from this type of cancer will be a thing of the past in the next 5-10 years, so even if it comes back there is some possibility that it will be a chronic condition by then.

Oh, and herceptin definitely causes insomnia! I am about to turn into a pumpkin.

[Joannie]

Joe:
When you say you expect Herceptin to be approved for adjuvant therapy, do you mean for someone like me who missed the trial, had standard chemo but no Herceptin. I'm 2 1/2 years out from chemo and wonder everyday if I should get Herceptin. My onc. still doesn't believe it will benefit me. I've been this site 2 - 3 times a day since ASCO started, trying to find out if I will ever be eligible for Herceptin. Are there enough of us gals out there who "missed" the boat that anyone cares??? I guess I feel that we are such a small group (I could be mistaken) that the time and effort won't be put forth to figure out if Herceptin will benefit us.
Thank you for all you do. This site has provided so much support/information for me since I've been diagnosed. I don't post a lot but I do visit quite often.
Joannie

[AlaskaAngel]

"Adjuvant" has usually been interpreted to mean a particular treatment added to a basic treatment to boost the effectiveness of the main treatment and they are then given at the same time.

Getting chemotherapy first and then the monoclonal antibody (Herceptin) afterward is a little confusing.... If they are given as a 1, 2 punch with Herceptin right after chemo I don't know if it is considered "late" really or not...

Does "late" Herceptin only apply to those who get it separately after chemo, no matter how late?

In spite of the notion that there are very few who fall into the group of people who were more than a year out from chemo and thus not considered at enough risk (or even worthy enough to bother proving the accuracy of scientific guesses at how ofen they actually do recur eventually) to justify traztuzumab, there seem to be a significant number visiting this site regularly. (I call this group the "Lost Regiment of HER2's", for obvious reasons!)

AlaskaAngel

[Montana]

I am part of the "Lost Regiment of HER2's" as AA so eloquently put it. I finished chemo about the first of March right before the results of ASCO. I asked my onc later about it, and he said as I had no node involvement, so I wasn't eligible. I wonder what he'll have to say when I ask him about it again next month.

I was stage 1, grade 3, and less than 1 cm with no nodes. I know I am early stage, but I worry all the time about recurrence.

[al from Canada]

This is VERY strange stuff because.....I always thought of Canada as medically challenged but I do know that after the intial HERA trials results for adjuvant therapy; our oncologist had all the HER2+ women, 12 mos. out of surgery, contacted and offered them 12 mos of herceptin. I don't know if there was more tumor block testing done. I remember him saying that 33 women qualified. I don't know if this is unique to Ontario, the hospital, or what but...


Sorry I can't help more. The other thought is that with Tykerb approvals around the corner; may some real creative onc's will prescribe off-label and give tykerb profilactically instead of herceptin..

Al