Any of you her2-neu (3+), T1N0 and not on Herceptin?

[Vicki]

I'm finishing up my fifth chemo of six 3-week sessions (FAC) and really want to add Herceptin afterwards, but my med. onc. doesn't think it's necessary. I had a 1.5 cm. tumor and three negative lymph nodes. My diagnosis was Paget's disease of the nipple, DCIS and infiltrating ductal carcinoma. From what I'm reading here, even node negative-individuals can benefit from Herceptin. Is this correct? With which metastases does it help: liver, lungs, brain? Also, what is NED? I don't understand the acronym. Are there any of you long-term survivors who stuck with a traditional regimen without Herceptin and are clean?

Thanks, Happy Spring and Wishing you each well,

Vicki

[Lisa]

Glad to hear you finished your chemo! Celebrate! As for Herceptin, at Her2+++, it would benefit you more than others. Yes, even with neg. nodes (I had 21 of 21 4 years ago), you can get recurrences. Or you may not. However, knowing what I know now, if I could have started Herceptin after my initial chemo for invasive ductal carcinoma (I am also Her2+++), I would have! At that time, it was only available to women with bc recurrences. (Now, 4 years later, I have liver and bone mets.) I personally believe it will prevent many, many such recurrences in the future. Herceptin is not a chemo; it clings to the Her2 protein which causes cells to quickly multiple and prevents them from doing so. It can be effective with recurrence to any organ, although the brain has a blood-brain barrier which prevents chemo and related drugs from entering. Ask your onc about it again; ask, too, about trials that you might enter with it. Most of us on this site credit Herceptin with prolonging our lives.

Love and healing light,

Lisa

[Brian]

It appears that you have been recently diagnosed and that you are not treating a recurrence. If that is the case unless you are stage IV you probably will not be able to get herceptin. My wife was diagnosed 13 years ago and received 6 treatments of CAF, 36 radiations treatments, 5 years of tamoxifin. She had a stage IV recurrence in her liver and lungs in her 11th year. It appears from her old pathology reports that her first tumors were her2+++. They are now as well. With herceptin and gemzar my wife is now NED (No evidence of disease)and we are taking weekly maintenance herceptin. You should aggressively attack the cancer at this adjuvent stage. This is your best chance of cure. Good Luck! God Bless!

[Paul]

Dear Vicki,

I want to congratuate you with respect to your near completion of chemo and welcome you to the group, albeit under difficult circumstances.

I have provided you with a cross-link link below to a list of clinical trials obtained at www.clinicaltrials.gov with the search terms "Herceptin, Stage I." My review of the list indicates that the first three clinical trials apply to Stage I patients. Unfortunately, the first trial (known as HERA) is conducted outside the U.S. and, to my knowledge, does not accept U.S. citizens as patients. The second two trials listed include UCLA as a location; however, it appears that you would not qualify for either due to prior use of breast cancer chemotherapy. In any event, I would still contact UCLA with the facts of your case to see if you qualify.

You can look into HER-2 vaccine programs, however, I believe that most programs do not accept Stage I patients. Just in case, you may want to contact Andrea York at the University of Washington (see contact number on clinical trial message board) to see if you could qualify. You can search www.clinicaltrials.gov for other vaccine programs with search terms such as "breast cancer, vaccine."

The technical answer to your questions regarding the effectiveness of herceptin in an adjuvant setting is as of yet unknown. There are on-going herceptin adjuvant clinical trials but these studies have published no results as of yet. Please be aware that Herceptin has been used in clinical trials in a neoadjuvant (pre-surgery) setting and the results were somewhat similiar to the results found in Stage IV use of the drug. Many patients feel, based upon anecdotal evidence, that herceptin may prove more effective if used prior to Stage IV when the tumor burden to the body is much less. It appears that you may want to contact the doctor referenced in your post and determine whether that doctor is willing to put you on herceptin in a non-clinical trial setting (generally referred to as "off-label" or "off-protocol" use).

Herceptin has been used (generally in combination with chemotherapeutic agents such as Taxol, Taxotere or Navelbine, with or without platinum salts such as Cisplatin or Carboplatin) for bone, lung and liver mets and such drug "cocktails" have been found effective. Herceptin can not penetrate the blood-brain barrier (BBB) and is generally not effective in treating brain mets. Many patients who have had whole brain radiation (WBR) in connection with brain mets feel that WBR may breach the BBB and allow herceptin to reach the brain in some quantity. This evidence is anecdotal as well.

The term "NED" stands for "no evidence of disease." It is a term most often used in Stage IV to indicate that generally-used diagnostic tests (e.g., CT scan, PET scan, MRI scan) can not detect the presence of cancer in the body after treatment for metastatic disease. Because cancer can exist at the cellular level without the presence of a solid tumor that is detectable, the term NED is used in lieu of the term "cure."

I hope this information is helpful.

Warmest regards,

Paul

[Chandi]

Hi Vicki !

My dx was in 1994, t2n1m0, tumor was er pr +ve and more PR. I had CMF chemo and tamoxifen. Stopped tamoxifen 97 Dec to see whether it was causing for liver enzymes to rise(big mistake). got a recurrence on the scar in 98. After the surgery, followed 26 radiations followed by CAF chemo and re-started tamoxifen. Developed a flu in 2001 march and got a persistant cough later it was diagnosed to the post radiation effect. Became hoarsiness in May 2003 and a routine scan showes a tiny liver tumor and a 2nd one in December 2003.
I was suspected of having stag 1v recurrance, liver & lungs. Started Xeloda in December 2003 and stopped tamoxifen. Scan in March 2004 showed good responds to Xeloda, not growing and spreading. I started Femara in March 2004. I have just completed Xelolda 6 cycles and now waiting for Herceptin (my original tumor was tested recently and found her2neu +2 & +3).
Hope my story will help you.
Hugs.
Chandi

[Vicki]

To those who responded to my question -- A BIG THANK YOU -- I am very grateful for your knowledge, experience and insight. It means everything to me and gives me the tools I need to proceed with the next step in my recovery. I feel strongly about embracing Herceptin, at my present node negative level, and will do everything I can to qualify for a clinical trial or go "off label" with a physician in my area. Thanks again -- you were each so helpful!

My healing thoughts are with you all,

Vicki

[marianne]

I must admit I'm one of the "odd" ones who chose not to take herceptin offered in the clinical trial. In April 2002, I had a 1.8 tumour, 1+ve node (out of 27 tested), lumpectomy, ACx4, Taxolx4 and 37 rads.

I'm a reference librarian and researched SO much on this when first diagnosed, and was concerned about the heart factor, the high recurrence of mets to the brain when on herceptin, the possibility of your cells becoming "immune" to herceptin and maybe it not working if I really needed it for a later recurrence, and just not wanting to extend my treatment for a year.

This turned out to be a good decision for me as it let me qualify for the her2 vaccine trial at the U of Washington in Seattle (no prior treatment with herceptin alowed.)I just completed my set of 5 vaccines 2 weeks ago and got back from a follow-up blood work visit yesterday. The whole vaccine experience has been wonderful. Andrea York and Dr. Nora Disis are exceptional people, and it's been a priviledge to get to know women so dedicated to finding a cure, or at least a sustainable non-toxic treatment for this disease.

I had a great time getting to know Seattle on each visit; I stayed overnight, and hiked all over the UW campus, and downtown Seattle - a great city, especially on a clear sunny day (it's amazing how many of my visits coincided with unusually good weather!)

I also take a bunch of supplements daily, and do low-carb, but the healthy type, mainly to avoid the "sugar spike" of the high glycemic index foods, as cancer cells love sugar.

Hope this info. helps
Marianne in WA.

[Vicki]

Marianne,

I was pleased to read your perspective based on your own personal experience and I truly appreciate hearing all sides of this. I'm so glad you mentioned your dietary adjustments as I do like sugar and will refrain. I have a few additional questions for you:

Are you her2-neu 3+, 2+ or 1+?

On this site, it mentions a percentage of 25-30% of Stage IV individuals have brain mets. You mention this also about a "high recurrence of mets to the brain when on herceptin." Is this documented somewhere? This is really critical in my decision-making process and I'm grateful you mentioned it. I am T1N0, 1.5 cm. tumor and had skin-sparing mastectomy and immediate reconstruction. My Bloom-Richardson score was 3+,3+ 2+. I'm currently on #5 of FAC and will finish #6 at the end of May. Then, I must decide how to proceed or not to proceed. I do agree about taking the least of anything and I don't know about the cell immunity of herceptin.

Also, as a reference librarian, have you checked on any stats or percentages to see about long-term BC survivors who are her2-neu who did not use herceptin, but chose the more traditional chemo route? I'm very interested in those figures and haven't heard much.

Is the her2vaccine trial only for node-positive women?

Finally, and my apologies for going on, what daily supplements do you take? Any special brand (Solgar, Solaray, etc.). I drink rice milk, eat a good quantity of fruits & vegetables, salmon once a week, egg whites for breakfast, etc., oatmeal and and English muffin. I currently take Centrum and calcium-magnesium. I want to keep it simple. My sister made up some Essiac tea she wants me to take when I finish chemo.

Your stay in Seattle sounds wonderful and I'm glad you had a chance to hike. This coming week, I am going on a full moon walk at our local environmental nature center with my parents and friends when they come up for Mother's Day.

Thanks for getting back to me on these items.

Vicki in So Cal.