Hi, I am back....question re:herceptin alone.

[Robyn]

It's been a long time since I've posted here....

I had a port placed in April and started my chemo a week later Taxotere and Herceptin, while unknown to us, the port was infected and I developed septic shock (I think a rare thing?). Anyway, I was on full life support for 5 weeks, 5 weeks recouping in hospital. So it was 10 weeks in all....awful for my young Family, I have a hubby and kids (9 and 7).....

Needless to say, I could not start chemo right away....and the lung tumours have been growing, but when I came out of hospital, I started herceptin alone just to "do" something while we wait for me to gain my strength ....by the end of this month, I will start some type of chemo again....(ugggg, I am scared).

Question is, has anyone been on Herceptin alone and had results or stability???

Thanks
Robyn

[Cathya]

Robyn;

I do know that Gina has mets and has successfully used herceptin alone to fight them for 7 years. There are others on the site as well and they will not doubt post. I have heard of other complications from ports but not yours. How awful for you and your family. We're here for you. Hang in there.

Cathy

[Lani]

As I understand it it was used in those so advanced they preferred not to have anymore chemotherapy, so in many of these patients it may have been an "uphill" battle for ANY medication to prove its efficacy:

1: J Clin Oncol. 2002 Feb 1;20(3):719-26. Links
Efficacy and safety of trastuzumab as a single agent in first-line treatment of HER2-overexpressing metastatic breast cancer.

Vogel CL,
Cobleigh MA,
Tripathy D,
Gutheil JC,
Harris LN,
Fehrenbacher L,
Slamon DJ,
Murphy M,
Novotny WF,
Burchmore M,
Shak S,
Stewart SJ,
Press M.
University of Miami School of Medicine, Comprehensive Cancer Research Group Inc, and Columbia Cancer Research Network of Florida, Miami, FL, USA.
PURPOSE: To evaluate the efficacy and safety of first-line, single-agent trastuzumab in women with HER2-overexpressing metastatic breast cancer. PATIENTS AND METHODS: One hundred fourteen women with HER2-overexpressing metastatic breast cancer were randomized to receive first-line treatment with trastuzumab 4 mg/kg loading dose, followed by 2 mg/kg weekly, or a higher 8 mg/kg loading dose, followed by 4 mg/kg weekly. RESULTS: The objective response rate was 26% (95% confidence interval [CI], 18.2% to 34.4%), with seven complete and 23 partial responses. Response rates in 111 assessable patients with 3+ and 2+ HER2 overexpression by immunohistochemistry (IHC) were 35% (95% CI, 24.4% to 44.7%) and none (95% CI, 0% to 15.5%), respectively. The clinical benefit rates in assessable patients with 3+ and 2+ HER2 overexpression were 48% and 7%, respectively. The response rates in 108 assessable patients with and without HER2 gene amplification by fluorescence in situ hybridization (FISH) analysis were 34% (95% CI, 23.9% to 45.7%) and 7% (95% CI, 0.8% to 22.8%), respectively. Seventeen (57%) of 30 patients with an objective response and 22 (51%) of 43 patients with clinical benefit had not experienced disease progression at follow-up at 12 months or later. The most common treatment-related adverse events were chills (25% of patients), asthenia (23%), fever (22%), pain (18%), and nausea (14%). Cardiac dysfunction occurred in two patients (2%); both had histories of cardiac disease and did not require additional intervention after discontinuation of trastuzumab. There was no clear evidence of a dose-response relationship for response, survival, or adverse events. CONCLUSION: Single-agent trastuzumab is active and well tolerated as first-line treatment of women with metastatic breast cancer with HER2 3+ overexpression by IHC or gene amplification by FISH.
PMID: 11821453 [PubMed - indexed for MEDLINE]

I reviewed the original paper and patients were excluded from the study if they had less than 6 months to live (estimated, of course), brain or leptomeningeal metastases, more than 30% of their liver taken over by mets, bone mets only, or any significant other medical condition. They had
never been treated with chemo since they had metastatic disease, hence, herceptin was their first line of treatment since developing metastases.

Hope this helps!

[Barbara H.]

Hi Robyn,
I'm sorry for what you have gone through. After 6 years from my original diagnoses, I develeped a brain met and extensive mets in the liver, nodes, skin, and lungs in May, 2004. After brain surgery, my oncologist decided to use Herceptin as a single agent to see its effectiveness and he wanted me to enjoy my daughter's wedding that July. With Herceptin alone all my mets became NED until March of this year when my tumor markers started to rise. Now I have minimal mets to the bone and have added Navelbine and Zometa. I have a pet scan this week. If all is clear I may be able to drop the Navelbine. If not, my oncologist may try to get me into a Tykerb Herceptin trial.
Good luck,
Barbara H.

[panicked911]

Sorry for all of the trouble you have had -may it be uphill from here - while i do not have metastatic disease, i am finishig 1 year of herceptain withou chemo - I was boarderlie for chemo and the Onc who coducted the Herceptain trials said no doubt t works without chemo and expects this will be the standard for HEr2 in years to come.
Hope this helps.

Susanne

[Hopeful]

Robyn, I am sorry to hear of the terrible ordeal you have gone through. I am recently diagnosed at Stage I and did not want to do chemotherapy. My onc strongly reccommended that I do a year of Herceptin alone. I have had one treatment so far and go for my second this week; I am midway through rads and will start Femara when they are finished.

What I have found interesting in my reading on Herceptin as adjuvant treatment for early stage breast cancer is that oncs, when asked, "Will you administer Herceptin without chemo?" will initially respond, "absolutely not." However, when that response is followed up with the question, "suppose you had a patient who, for whatever reason, was either too ill or absolutely refuses to have chemo, would you administer the drug as a single agent?" to a one, they answer, "Yes." This type of response leads me to believe that they all think the benefits of Herceptin are so important that the patient should have it, regardless of their chemo status. I think Herceptin isn't used alone in early stage disease because there are no clinical trials for it and no protocols. Doctors affiliated with large teaching hospitals seem to not want to deviate from what has been done in trials, while others (like my onc, who is in private practice) are more willing to do so. The sad thing is, since this is an "off-label" use of the drug, we will not get statistics compiled for its efficacy as a single agent for early stage disease - no doubt results will be on an anectdotal basis for some time.

Hopeful

[saleboat]

Oh my Robyn, I'm so sorry to hear what you've been through. That is just awful and I'm glad you're on the other side of it now.

As for herceptin alone, I'm no expert, but I imagine your Onc can monitor how your respond to H as a single agent using scans, and maybe blood tests. It seems preferable to see if it works alone, before adding chemo. Sounds like you've been through enough.

Good luck,
Jen

[R.B.]

If you have not thought about diet as an adjunct you might like to look at the omega three six posts.

This one shows for at least one person it may have had significant impact.

http://www.her2support.org/vbulleti...ought+provoking

You may also like to look at the Greek Diet post using the search facility above.

The omega three six balance is important to the immue system. I have seen specific mention of omega threes benifiting sepsis. You might like to search on NCBI.

Diet is capable of altering gene expression including HER2.

There is an interesting post on GLA increasing the efficacy of Herceptin in trials. (please see articles of interest or use search facility.)

There is potential in diet for risk reduction.

Please DO talk to your doctor about dietary changes. Fats have powerful impacts and there is a limited group of people for whom they can cause problems. You could always print out some bits and take them with you.

There are also diet posts under the breast cancer diet.


RB

[tricia keegan]

Hi a lady I know has bone cancer mets which have been contained for 3 years on herceptin alone and is still doing well.

Tricia

[Shell]

Robyn-


That was quite a battle you went through. I hope you continue to feel better.

Shell