Herceptin Use and Prognosis for Stage IV

Be positive in your outlook. I have been on herceptin for nearly 6 and one-half years (since October 1998) and I continue to be NED.

Phylicia

Hi Kim, I sooo understand that heavy feeling when those dumb numbers come up. I feel blessed everyday to be here as we all do, but we want more. i have been stage IV officially since 2002 and had a pretty grave situation. But i have responded very well to treatments (another blessing). when i deal with my regualr oncologist, who I like, i feel like they see me as an anomaly and that they are just waiting for the other shoe to drop, which is a very contagious feeling. i think many of us fight that feeling daily already and we don't need anyone else augmenting it. BUT when i see my bc specialist, i feel like there is no reason to think i am any different from anyone else. He rattles off the success stories, "I've been treating one woman, stage IV, for 13 years-she's traveled the world raising her kids, etc. i got another woman, 9 years with liver mets on herceptin-selling real estate in Vegas having a blast, i have another woman 9 years with liver mets-doesn't even have the help of herceptin and doing great..." he can go on and on and he often is telling me of different cases, not just the same. He talks about the days in the future when i come to see him and I'm showing him graduation pictures (my girls are 8 and 6) and grandkids. And i tend to trust that as he is so hopeful about what is happening in bc.

i just wanted to share that encouragement with you and hope it helps. i am always looking for the "long-termers" myself and love it when I find them.

OH, i work for a breast cancer foundation (we pay for women in treatment to have complementary care services) and we have one gal who has had stage IV (brain and bone) since the late 90's. She shared with me that she met some others 5 years at a place here in CO called Spa for the Spirit, all stage IV. they are having a reunion and of the 10 women who went to Spa for the Spirit, 7 of them are alive and well. I hope that was encouraging, i meant it to be, sorry if it wasn't. i'll stop now.
Love to you kim,
joy

Dear Annemarie and Kim,
I have been in touch with the Seattle team a number of times and my understanding is that within the next month or two, they will open up the vaccine trial to NON-HLA-A2+ candidates with concurrent herceptin use.
Give Patty the research nurse a call and ask about upcoming trials.
Regards,
Al

Oh Joy and Phylicia,
I love hearing these stories; please keep them coming...Joy I understand why your mom gave you that name...it is so encouraging to hear about the women who are getting close to 10 years...it is such a big bucket full of hope....your oncologist is unbelievable; he sounds like mine ... I always tell mine he must have had a minor in psychology...and Phylicia your own story is so uplifting...and Joy...where is that spa for the spirit??!! We should all join them...
Love, Kim (from CT)

Hi there, I know frustrating it is and wanting someone to be able to tell you how long we have left. I as well am ER-, HER2+, and have mets to my lungs. All I can tell you is that my onc told me about five months ago that I had about a year to live. I was diagnosed in May of 2003. I have inflammatory breast cancer. Even though she told me this, I really don't feel like I'm checking out in what would be about 7 months. So, I guess maybe a third opinion wouldn't hurt. We can never have to much information. And, I would also suggest you look up information about your specific type of cancer on the internet. That is where I learned most of the information I got about mine. If you ever need to vent, feel free to email me anytime.

Martha
FisherRN2B@aol.com

Dear Martha,
12 months ago my wife was told she had 2 weeks to live. Go figure!
Al

My onc never prognosticates on how much time is left and I like that. He feels there is always somewhere else to turn and something else to try and I get that feeling from people on this website too. We are not a statistic. Keep hoping for the best and doing everything you can to go after the disease to keep it from progressing. I have been dealing with liver mets for a year now and am ER/PR - , Her2+++ also.

Kim, welcome,

First of all, I really think the oncs should just lose the Prog thing...I mean, hey, when are they EVER right??? I am ER-PR-her2 +++ have had all kinds of mets and recovered and regressed and recovered...blah, blah.. thanks to herceptin alone since April of 1999 when I officially became Stage IV--what is that 6 years plus out now?? I was told at diagnosis (age 33) that I would never see my son, then 6 years, finish first grade...but surprise, he is starting high school this fall...smile. Time goes too quickly.

Yes, some of us have manuevered our way through the system to live many years. I am 8 out from original Dx. For a while, I, too, was considered somewhat of an anomally, but now, many folks are using herceptin to their great benefit. I am sure you will, too, but it may not be the easiest thing to deal with at times...and you must INFORM yourself by reading this site and doing your own research as much as time will allow. Stay ahead of the game and you will be around to blow out more than 100 candles on your cake because the one thing living through all this does is it makes you a bit of a "bionic woman" (smile)...you are probably too young to remember that old tv show, but seriously, I am sure all of us on here have been strengthened in ways we can not enumerate by going through this experience. What a ride...smile. If you are open to it, you can learn a lot and meet a lot of great people and inspire others even as you, too, have been inspired...

Best of luck to you,
Gina

[Marily]

Hi, My oncologist said never look at stats... and as long as there is something else ahead that you can try you just keep going on.
I was dx stage IV, 6 years ago and remain NED.
hugs, and live life to the fullest with love and laughter.
Marily

One of the most valuable things we can do to heal one another is listen to each other's stories. -Rebecca Falls-

[marymary]

I am starting to feel like something of a success story since my diagnosis in April of 2002. My cancer was quite advanced at diagnosis. I had a huge tumor and mets to skin. Three rounds of A/C, although helpful, did not stop the growth of the skin mets, so an "emergency" mastectomy was called for. The surgeon removed so much skin I avoided standing up straight for months, if not years. A week after surgery, I began Taxotere. Approximately one month later, a FISH was performed and it was finally discovered that I was strongly HER2 positive. I had a year of Herceptin added to the 6 months of Taxotere. I expected to die. The surgeon told my husband that she had seen patients like me last three months or so. I had radiation (lots!). All scans were clear, however. Finally, they were done with me and sent me home (to do what?) and then I really started feeling hysterical.

I was about 43 at this time and the doctor proclaimed that I was in menopause for good. Privately I thought he was wrong. In the spring of '03 I began to feel a little more bright eyed and sure enough, menopause appeared to be just that, a pause. I took a deep breath and had an oopherectomy. I was fighting with every tool at my disposal. Now, I was eligible for Arimidex which I was hearing wonderful things about through the grapevine. My doctor was nonchalant and said I could "do what you want." I wanted Arimidex.

Support groups were my lifesaver. I have made some wonderful, amazing, life long friends there. I began to do some travelling since my days were numbered. Tick, tick, tick went the clock. It was like a bad Peter Pan book.

Last year, in the spring of '05, I was diagnosed with two small brain metastases. Basically, this remains a supposition since they were never able to be biopsied and I had no baseline brain MRI. My oncologist would not give me Herceptin so at that time I changed my care over to Dr. Park at UCSF. I had gamma knife, and have been on weekly Herceptin ever since. I like to be aggressive. I want to make my own decisions. After all, I am the one that must live (or not!) with the consequences.

Last month I received my first vaccine at the University of Washington. I have two more vaccines to go. I am really excited about the work that is being done in Washington.

So, in summary, I was "supposed" to die approximately 4 years ago. This coming April I will be a 5 year survivor. Currently my disease is considered stable. My body is clear. The only brain lesion still visible is most likely necrotic, and continues to wither away.

I am trying to stay ahead of the curve scientifically. Herceptin, Arimidex, Taxotere, oopherectomy, Gamma Knife and now a HER II neu vaccine (who would have thought!) are all tools that I am using to fight. I do expect to die some day, but today is rather inconvenient. I have a trip to Seattle to plan, my Nephew's wedding to attend and a beautiful new copper brown embroidered and beaded dress that clings like a peach to my figure hanging in the closet. I need to find shoes to match and today is Farmer's Market. There is broccoli to be bought.

I am counting on everyone at the wedding whispering to my brother "that's your sick sister? No ****** way!"

Mary

"History will be kind to me or I intend to write it" Winston Churchill

[JerseyGirl]

I can't tell you how happy I am to read about you ladies and the longevity! I'm new to this board, but it's truly given me hope. After my dx in March with Stage IV to liver, I had myself packed away, but now, most of the anxiety is gone and I know I can look forward to years...thanks to posts like the ones from Chris, Annlyn and Mary! You go girls!!!
I don't know why some oncs give us no hope; we just want to be treated like the other stages....
And hang in there Joan; there's many treatements to chose from and one will be right for you!
Julie

[Joe]

Joan,

I too am 4th stage BC('95), 80% Her-2+, mets to liver ('98). Of course this is a very scary place to be BUT I know others who have prevailed. Some, who are on Herceptin, had EF at 45, had to go off for several months and then got back up above 50. Some have undergone Tailor something blood tests and found that though they are HER-2+ they are NOT good candidates for Herceptin and have been put on a different protocol, 4 Adrymicin and 8 of some other combination. If you want I can get specifics. What state are you in? I now live in Fla but began in NY where I am originally from. I have great contacts in both places, plus my all time favorite guru now in Tenn. Stay strong. Stay connected to your spirit, at your core. It has the power to heal you. The body does as the mind instructs. So careful what you think all day. It predicts your fate!

With loving and healing energy,
ANDI

[Andrea Barnett Budin]

Do any of you check out the HERCEPTIN site below? Has great info also.
http://her2support.org/vbulletin/sho...2&goto=newpost

We all know we all have to stay as well informed as possible. Doing it through one another is a double bonus. Sharing feelings and experiences, boosting our inner strength and courage. So inspiring. So enriching. SO EMPOWERING!

Always with love,
ANDK

[sophie]

i have read some really good information on this site ! so thank you all , but i did read on vaccine ! could someone tell me what this is please !!! i have secondary bone cancer in the spine currently on herceptin and seems to contain it at present lets hope it stays like that! my onc said i have 2 to 10 years , so this gives a big gap who knows what end i will be at.
sophie

[Cindee]

I have stage 3 her2 positive breast cancer but because the adramycin gave me CHF I cannot have the Herceptin(or so my oncologist says). I finished my chemo 6 treatments of the big three and after a double mastecomy(one breast with two lymph nodes) and hysterectomy, 25 radiation treatments. My oncologist says well we will just monitor you and hope it does not reoccur in two years. Ooops I forgot to say I have the Brca 2 gene. I feel like I am not doing everything I can and need to be more proactive. I have a 7 year old that I need to stick around for. I am not ready to give up and whenever I mention to my oncologist if I need to or can I do anything else I get no answers. I am so lost and I believe the good Lord help me find this website.

Thanks Cindee

[Lani]

that BRCA 1 was associated with EGFR and couldn't remember what BRCA2 was associated with, so I went lookiing for an article. I found the following:

: Mod Pathol. 2005 Oct;18(10):1305-20. Links
The molecular pathology of hereditary breast cancer: genetic testing and therapeutic implications.

Honrado E,
Benitez J,
Palacios J.
Human Genetics Department, Centro Nacional de Investigaciones Oncologicas (CNIO), Madrid, Spain.
Cancer arising in carriers of mutations in the BRCA1 and BRCA2 genes differs from sporadic breast cancer of age-matched controls and from non-BRCA1/2 familial breast carcinomas in its morphological, immunophenotypic and molecular characteristics. Most BRCA1 carcinomas have the basal cell phenotype, a subtype of high-grade, highly proliferating, estrogen receptor- and HER2-negative breast carcinomas, characterized by the expression of basal or myoepithelial markers such as basal keratins, P-cadherin, epidermal growth factor receptor, etc. This phenotype is rarely found in BRCA2 carcinomas, which are of higher grade than sporadic age-matched controls, but tend to be estrogen receptor- and progesterone receptor-positive. The expression of the cell-cycle proteins cyclins A, B1 and E and SKP2 is associated with a BRCA1 phenotype, whereas cyclin D1 and p27 expression is associated with BRCA2 carcinomas. Recent studies have shown that hereditary carcinomas that are not attributable to BRCA1/2 mutations have phenotypic similarities to BRCA2 tumors, but tend to be of lower grade and proliferation index. Somatic mutations in the BRCA genes are rarely found in hereditary tumors; by contrast, BRCA1 and BRCA2 loss of heterozygosity (LOH) is found in almost all BRCA1 and BRCA2 carcinomas, respectively. Furthermore, all types of hereditary breast carcinomas have a low frequency of HER2 expression. Finally, comparative genomic hybridization studies have revealed differences in chromosomal gains and losses between genotypes. The pathological and molecular features of hereditary breast cancer can drive specific treatments and influence the process of mutation screening. In addition, detecting molecular changes such as BRCA1/2 LOH in nonatypical cells obtained by random fine-needle aspiration, ductal lavage or nipple aspirate fluid may help to earlier identify carrier women who are at an even higher risk of developing breast carcinoma.
PMID: 15933754 [PubMed - indexed for MEDLINE]

According to this, your tumor would tend to be ER and/or PR positive. You did not say if yours was. (even a little positive ie, >10% gives you something to aim at with antihormonals)

If yours is not, and as lapatinib is not yet FDA approved for Stage 4s let alone Stage 3s, perhaps you could ask your oncologist about trying a NSAID like naprosyn or clinoril which works both as an antiangiogenic and as an antiaromatase.

Unfortunately expensive testing looking for other markers will probably not get you anywhere as the medications which act as inhibitors for these other markers (VEGFR,etc) aren't yet approved for non-metastatic breast cancer

Back around February or March there was an article/news strory about work by Javier Menendez and Ruth Lupu of Northwestern stating that one could get almost as much down-regulation of her2 signalling utilizing olive oil/flaxseed oil and the like as with herceptin.

Hope some of this helps!

[Cindee]

Lani,

No my tumor is neither ER and/or PR positive. I am interested in the article about work by Javier Menendez and Ruth Lupu of Northwestern stating that one could get almost as much down-regulation of her2 signalling utilizing olive oil/flaxseed oil and the like as with herceptin. Is this story on this website as I am new to this site, but feel like this is the answer that I have been searching for. I need to talk to others like me with the same affliction. Cancer is not cancer is not cancer. I have learned this the hard way. I am ashamed of this but I am so envious of that stage I or II estrogen based breast cancer patient.

Thanks Cindee

[Lani]

Menendez JA, Lilien DL, Nanda A, Polin RS. Related Articles, Links
Use of fluorodeoxyglucose-positron emission tomography for the differentiation of cerebral lesions in patients with acquired immune deficiency syndrome.
Neurosurg Focus. 2000 Feb 15;8(2):e2.
PMID: 16869549 [PubMed - indexed for MEDLINE]
3: Menendez JA, Mehmi I, Lupu R. Related Articles, Links
Trastuzumab in combination with heregulin-activated Her-2 (erbB-2) triggers a receptor-enhanced chemosensitivity effect in the absence of Her-2 overexpression.
J Clin Oncol. 2006 Aug 10;24(23):3735-46. Epub 2006 Jul 17.
PMID: 16847284 [PubMed - indexed for MEDLINE]
4: Lupu R, Menendez JA. Related Articles, Links
Targeting fatty acid synthase in breast and endometrial cancer: An alternative to selective estrogen receptor modulators?
Endocrinology. 2006 Sep;147(9):4056-66. Epub 2006 Jun 29.
PMID: 16809439 [PubMed - in process]
5: Menendez JA, Lupu R. Related Articles, Links
Oncogenic properties of the endogenous fatty acid metabolism: molecular pathology of fatty acid synthase in cancer cells.
Curr Opin Clin Nutr Metab Care. 2006 Jul;9(4):346-57.
PMID: 16778562 [PubMed - in process]
6: Vellon L, Menendez JA, Lupu R. Related Articles, Links
A bidirectional "alpha(v)beta(3) integrin-ERK1/ERK2 MAPK" connection regulates the proliferation of breast cancer cells.
Mol Carcinog. 2006 May 16; [Epub ahead of print]
PMID: 16705745 [PubMed - as supplied by publisher]
7: Colomer R, Menendez JA. Related Articles, Links
Mediterranean diet, olive oil and cancer.
Clin Transl Oncol. 2006 Jan;8(1):15-21. Review.
PMID: 16632435 [PubMed - indexed for MEDLINE]
8: Dominguez A, Menendez JA, Inguanzo M, Pis JJ. Related Articles, Links
Production of bio-fuels by high temperature pyrolysis of sewage sludge using conventional and microwave heating.
Bioresour Technol. 2006 Jul;97(10):1185-93. Epub 2006 Feb 10.
PMID: 16473008 [PubMed - indexed for MEDLINE]
9: Menendez JA, Vellon L, Lupu R. Related Articles, Links
The antiobesity drug Orlistat induces cytotoxic effects, suppresses Her-2/neu (erbB-2) oncogene overexpression, and synergistically interacts with trastuzumab (Herceptin) in chemoresistant ovarian cancer cells.
Int J Gynecol Cancer. 2006 Jan-Feb;16(1):219-21. No abstract available.
PMID: 16445636 [PubMed - indexed for MEDLINE]
10: Menendez JA, Papadimitropoulou A, Vellon L, Lupu R. Related Articles, Links
A genomic explanation connecting "Mediterranean diet", olive oil and cancer: Oleic acid, the main monounsaturated Fatty acid of olive oil, induces formation of inhibitory "PEA3 transcription factor-PEA3 DNA binding site" complexes at the Her-2/neu (erbB-2) oncogene promoter in breast, ovarian and stomach cancer cells.
Eur J Cancer. 2006 Jan 6; [Epub ahead of print]
PMID: 16406575 [PubMed - as supplied by publisher]
11: Mangano FT, Menendez JA, Habrock T, Narayan P, Leonard JR, Park TS, Smyth MD. Related Articles, Links
Early programmable valve malfunctions in pediatric hydrocephalus.
J Neurosurg. 2005 Dec;103(6 Suppl):501-7.
PMID: 16383248 [PubMed - indexed for MEDLINE]
12: Menendez JA, Vellon L, Colomer R, Lupu R. Related Articles, Links
Effect of gamma-linolenic acid on the transcriptional activity of the Her-2/neu (erbB-2) oncogene.
J Natl Cancer Inst. 2005 Nov 2;97(21):1611-5.
PMID: 16264182 [PubMed - indexed for MEDLINE]
13: Menendez JA, Lupu R, Colomer R. Related Articles, Links
Targeting fatty acid synthase: potential for therapeutic intervention in her-2/neu-overexpressing breast cancer.
Drug News Perspect. 2005 Jul-Aug;18(6):375-85. Review.
PMID: 16247515 [PubMed - indexed for MEDLINE]
14: Aiyagari V, Menendez JA, Diringer MN. Related Articles, Links
Treatment of severe coagulopathy after gunshot injury to the head using recombinant activated factor VII.
J Crit Care. 2005 Jun;20(2):176-9.
PMID: 16139160 [PubMed - indexed for MEDLINE]
15: Menendez JA, Lupu R, Colomer R. Related Articles, Links
Exogenous supplementation with omega-3 polyunsaturated fatty acid docosahexaenoic acid (DHA; 22:6n-3) synergistically enhances taxane cytotoxicity and downregulates Her-2/neu (c-erbB-2) oncogene expression in human breast cancer cells.
Eur J Cancer Prev. 2005 Jun;14(3):263-70.
PMID: 15901996 [PubMed - indexed for MEDLINE]
16: Menendez JA, Oza BP, Colomer R, Lupu R. Related Articles, Links
The estrogenic activity of synthetic progestins used in oral contraceptives enhances fatty acid synthase-dependent breast cancer cell proliferation and survival.
Int J Oncol. 2005 Jun;26(6):1507-15.
PMID: 15870863 [PubMed - indexed for MEDLINE]
17: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Antitumoral actions of the anti-obesity drug orlistat (XenicalTM) in breast cancer cells: blockade of cell cycle progression, promotion of apoptotic cell death and PEA3-mediated transcriptional repression of Her2/neu (erbB-2) oncogene.
Ann Oncol. 2005 Aug;16(8):1253-67. Epub 2005 May 3.
PMID: 15870086 [PubMed - indexed for MEDLINE]
18: Vellon L, Menendez JA, Lupu R. Related Articles, Links
AlphaVbeta3 integrin regulates heregulin (HRG)-induced cell proliferation and survival in breast cancer.
Oncogene. 2005 May 26;24(23):3759-73.
PMID: 15782133 [PubMed - indexed for MEDLINE]
19: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Targeting fatty acid synthase-driven lipid rafts: a novel strategy to overcome trastuzumab resistance in breast cancer cells.
Med Hypotheses. 2005;64(5):997-1001.
PMID: 15780499 [PubMed - indexed for MEDLINE]
20: Menendez JA, Vellon L, Lupu R. Related Articles, Links
Orlistat: from antiobesity drug to anticancer agent in Her-2/neu (erbB-2)-overexpressing gastrointestinal tumors?
Exp Biol Med (Maywood). 2005 Mar;230(3):151-4. No abstract available.
PMID: 15734718 [PubMed - indexed for MEDLINE]

I thinks quite a few of these are open access, otherwise see if a librarian can help you access some.

I will try to find the news release I referred to earlier and post references to some of his pre2005 articles. Unfortunately the synergistic effect of herceptin and orlistat (weightloss drug) doesn't seem to work in humans as we DO NOT absorb the drug (that's how it works in weightloss--it drags dietary fat with it when it gets excreted as it is not absorbed)

Dear Gina,
You are absolutely incredible! Thank you for your pearls of wisdom and they are indeed pearls.
Yes, the more I go on with this dratted stage iv, the more I begin to feel like a bionic women (or as my kids say; "Wonder women!).
Since I was originally diagnosed, I have found myself on herceptin, involved in the Seattle vaccine trial and now on a raw veggie, vegan diet. Frankly I have never felt better and if it weren't for that darn weekly herceptin, I might even have moments of forgetting !
Oh well, thank you again for your pearls.
Love Kim

Kim,

I also live with fear of what life would be like for myself and my 2 kids (13 and 9) without Caryn, but I hang on to the belief that the rules have changed and continue to change dramamtically in short periods of time. I find it helpful to focus on short windows. As an example, within the next 3-5 years how much better will they be able to manage this disease than they are now? I believe significantly. How soon after that will there be a cure? All it takes is ONE discovery!

As a result of all the time I spend researching and reading, I wouldn't be surprised if we're soon faced with an overpopulation problem as a result of all the medical advances that are being made at an astonishing pace. Imagine that!!! It seems that technology has allowed us to accelerate the discovery process so dramatically and so quick that....Live, Love and Be Happy!!!!

Best regards,
Eric