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Old 04-24-2006, 09:29 AM   #41
callen03
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I was just recently diagnosed with Stage IV Breast Cancer. I had a bilateral masectomy this January, and I am paricipating in a clincal study (Herceptin, Doxil, & Carbo). My doctor told me the average is 2 years of remission, but I am hoping to be in the higher numbers. That group everyone together regardless of age, health, etc. I am in great shape other than the cancer, and Lord knows I want to live.

I am 49 and raising a 12-year-old grandson who needs me. I also take care of my elderly mom. I am scared too and find it hard to stay positive when all the stats are negative. Let me know if you find some positive stories we can share.
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Old 04-27-2006, 03:24 PM   #42
Marily
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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-
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Old 08-29-2006, 03:50 PM   #43
jelevin
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longevity

the whole thing is scary and thats an understatement. I am her 2 positive and started a trial at NIH which lasted one treatment when my echo-ejection fraction went down to 149 and they'd only treat me at 155. any one else have that and ever have it go up and when??
next step is navelbein? thoughts
i am stage 4 with liver and bone mets.
thanks, Joan
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Old 08-30-2006, 09:11 PM   #44
chrisy
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to Joan/JELEVIN

Hi Joan,
You might want to try posting your question on the main board, more people will see it there and you should get some good feedback.

Some more information would also help.
What chemo regimens have you already had? There's lots of chemos out there, so knowing what you've done will help people comment.

What is the NIH trial about (what are you getting?).

The echo ejection fraction - do you men Left ventricle ejection fraction (LVEF)? which is measured with either an echo or MUGA scan. Usually this is between 55-70. So if your LVEF dropped from 55 go 49, they would need to address that. Below 50 is generally a signal of cardiac damage but this (when it is a result of Herceptin toxicity) is almost always reversible although you have to stop Herceptin until it rebounds back to the normal range. This can take a few weeks to a few months.

Don't know if this helps at all, but again, try posting on the main Her2group board. Just go to the top and click on "thread starter"

Take care
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 08-31-2006, 06:10 AM   #45
Annlyn
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Hi. Life just gets better and better!
It is now nearly 8 years since my diagosis in 1998. I am ER-PR-her2 +++, had approximately 30 spots on the lungs in 2001 and an erosion at T9. I have been on Herceptin since that time. After 11 weekly doses with taxol weekly there was no clinical evidence of disease so I changed to Herceptin alone, weekly till August 2005 when I transferred to a 3 weekly dose. I have also had Aredia 3 weekly since 2001.
I have never felt better!
Good Luck with your journey
Annlyn
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Old 08-31-2006, 09:43 AM   #46
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History Will Be Kind to Me

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
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Old 08-31-2006, 05:53 PM   #47
JerseyGirl
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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
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Old 09-02-2006, 11:59 AM   #48
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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
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Old 09-08-2006, 09:35 PM   #49
Cindee
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help me please!

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
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Old 09-08-2006, 10:02 PM   #50
Lani
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When I read your plea I remembered that I had read...

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!
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Old 09-08-2006, 10:20 PM   #51
Cindee
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Thanks

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
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Old 09-08-2006, 11:01 PM   #52
Lani
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here us bibliography back to March 2005 of his articles

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)
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Old 09-08-2006, 11:05 PM   #53
Lani
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put Javier Menendez into BBC news website search box and voila!

News - Plant oil 'acts like cancer drug'
Inexpensive therapy hopeThe latest work by Dr Javier Menendez and colleagues at Northwestern University suggests evening primrose oil might be a cheaper alternative, or add extra protection.
2 Nov 2005

News - Olive oil acid 'cuts cancer risk'
Caution urgedDr Menendez said it might be possible to delay or prevent herceptin resistance in breast cancer patients carrying high levels of the rogue gene by including olive oil in their diet.
10 Jan 2005

Do the same and read the first article!
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Old 09-08-2006, 11:08 PM   #54
Lani
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did the same w Medscape and ...

Oil May Fight a Cancer-Causing Gene

Miranda Hitti



Nov. 1, 2005 -- Could oil from tiny seeds help bring a big, bad cancer gene to its knees?

Maybe, but it's going to take a lot more work to find out, according to a new study in The Journal of the National Cancer Institute.

Keep that in mind before you delve into the details of the study, which involved cancer cells, not people or animals.

The scientists included Javier Menendez, PhD, and Ruth Lupu, PhD.

Menendez is a research assistant professor of medicine at Northwestern University's Feinberg School of Medicine. Lupu is a professor of medicine at Northwestern University and a researcher at Northwestern's Robert H. Lurie Comprehensive Cancer Center.

In One Corner: A Cancer Gene

The study focuses on the Her-2/neu cancer gene. It's involved in some (but not all) cancers, including more than a fifth of breast cancers.

The gene has been linked to particularly aggressive breast tumors, and cancer patients with this gene often have a poor prognosis, Lupu says in a news release.

The gene orders the overproduction of a protein called the Her-2/neu protein. Some cancer cells grow when exposed to Her-2/neu protein.

In the Other Corner: A Seed Oil

The researchers tested gamma-linolenic acid against cancer cells with the Her-2/neu gene.

Gamma-linolenic acid, or "GLA," is found in oil from the seeds of evening primrose, borage, and black currant. Some studies have suggested that GLA might target cancer cells without affecting healthy cells, write the scientists.

Round One: GLA vs. the Gene

The researchers studied human breast cancer cells with the Her-2/neu gene. They exposed some of those cells to GLA for 48 hours. For comparison, they left other cancer cells alone.

Afterward, they checked the surfaces of the cells for the Her-2/neu protein.

The GLA-exposed cancer cells showed "substantially" less of that protein than the cancer cells that hadn't been exposed to GLA, the researchers write.

Round Two: The Rematch

Next, the researchers exposed more breast cancer cells to various doses of GLA for 48 hours. Then, they poked around in part of those cells' genetic material.

The higher the GLA dose, the higher the odds that those cells didn't copy the Her-2/neu gene. GLA may have been a stumbling block in the copying of that cancer gene.

Round Three: Tag-Team With Cancer Drug

GLA has been shown to make cells more sensitive to the effects of some cancer drugs, write the researchers.

So they teamed GLA with the breast cancer drug Herceptin in some lab tests. Herceptin targets breast cancer cells that grow when exposed to the Her-2/neu protein.

The combination made breast cancer cells 30 to 40 times more sensitive to Herceptin. That was a significant difference, write the researchers.

GLA and Herceptin work differently on Her-2/neu, says Menendez in a news release.

Not a Knockout

The researchers call for more studies of GLA and cancers with the Her-2/neu gene. But they caution that extensive preliminary studies are necessary before GLA can be tested in clinical trials.

In January, the same team of researchers reported in the Annals of Oncology that a fatty acid found in olive oil may also counter the Her-2/neu gene. That study, too, was based on lab tests of breast cancer cells.

SOURCES: Menendez, J. Journal of the National Cancer Institute, Nov. 2, 2005; vol 97: pp 1611-1615. WebMD Medical Reference from Healthwise: "Herceptin." News release, Northwestern University.

Reviewed by Louise Chang
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Old 09-09-2006, 05:21 AM   #55
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Cindee,

I am Stage III, HER2+++, ER/PR-, and out of 26 lymph nodes 14 were cancer. Do not despair because you can't receive Herceptin. They are constantly doing research and new drugs are becoming available all the time. Breast cancer is a dreadful disease and all the women on this board are fighting this disease. There is a lot of support here and a wealth of information.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-09-2006, 12:45 PM   #56
Joe
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Dear Cindee,

I am right here by your side. I will not give up on you, but you must promise to do the same! Your 7 yr old does indeed need you. Focus not on the fear, which is a daunting challenge I know, but rather on your wellness. WHAT YOU THINK ALL DAY PREDICTS YOUR FUTURE. So stay far from all forms of negativity (experiencing the necessary what ifs and horror scenarios) and moving as quickly as possible to serenity and the solid KNOWING that you were meant to remain here on Earth, happy, giving, caring, loving and grateful. Your child is a huge part of your mission here. Focus on the joy you derive from that relationship, not on the fearsome possibilities. DO NOT GIVE POWER AWAY TO SUCH NEGATIVE THINKING. You can control your thoughts. They are full of energy. Try to peacefully go to your center, in silence, breathing deeply, and connect with your Inner Self. That is your Soul, your Spirit. It is full of eons of wisdom, it is sacred energy, it puts you in touch with the power of the Universe, which is inifinite, beyond our comprehension. Be awes by the beauty that surrounds us all. And by your PERSONAL EMPOWERMENT, granted you as you were born into this world. Most of us do not know we are so strong and courageous. But how perceptive we become, how keen our hearing and understanding -- once we have been forced to find our Soul! Please stay in touch with me.

Has it been suggested that you go for every 3 or 4 month CT scans (of the chest/abdomen and pelvis -- with and without contrast)? This is enormously reassuring to me, a firm confirmation that I am STABLE. It's like renewing my contract with Life each time. I go to a oncological nutritionist, which in and of itself is a rarity and a find, in Manhattan. I take many immune boosting vitamins that keep my heart and bones strong as well, and fight free radicals.

You have the power to heal yourself (with the help of modern medicine and the right docs). I have 5 oncs. Each is brilliant and each is highly regarded by the professionals as well as me. They each treat me with respect, dignity and positivity. And they each have something different to add to the mix, to help me proceed.

WHAT DOES "CHF" MEAN?

You are not lost. You are having doubts and that is natural. But you can concentrate to aligning yourself w/your Spirit which is the True You and the source of great strength and courage, if you allow it to be.

I also do take 2 meds that help relax my mind and lift my spirits. I am an extremely positive person, despite 4th stage BC (in '95) and a metastasis in '98 to the liver. I am a warrior. And you too can determine to be one as well.

With loving and healing energy being sent your way,
ANDI
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Old 09-10-2006, 05:23 AM   #57
sophie
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Talking

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.
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Old 10-02-2006, 12:23 PM   #58
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
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
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Old 02-02-2007, 04:59 PM   #59
sophie
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Talking hi

i was also told 2 years , but up to 10 if controled, i found this hard now DECIDED after a few months to start a tick list of all the things i want to do with my best friends (my 2 children, mum and dad, and my big sis and my friends) i am now just starting , i am off to Mexico on Tuedays !
thats number 2 , number 1 was to spend this christmas all together, and yes the list goes on. i have also took time doing memeory boxes for my two children, getting their birthday cards and wedding cards , engagement, first child and the list goes on. so i found this special because we are lucky in one way we can get things ready and prepare things. sorry for going on keep positive.
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Old 02-03-2007, 02:15 AM   #60
Marily
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Congestive Heart Failure and Herceptin

Cindee, I want to share a bit of what has happened to me. My left ventricular function went down to 21. I have a fantastic Cardiologist who with medication and careful watching has me back on Herceptin. Add a cardiologist to your Doctors. Also don't just accept one Dr's opinion, you must be strong and proactive. When you find information that you feel may be a benefit to you, ask questions! If you don't get answers (ones that make sense to you ) find someone who will give you a better explanation why you may or may not fit that treatment and than decide. My cancer was very aggressive and 2 months after I was diagnosed, I had gone from a small lump to stage IV breast cancer, highly er/pr positive and highly her2pos...+++ My tumor was 7.5 cm and the skin of my breast was firm, red and warm. I had lymph node involvement, a tumor in my liver, and Mets to lung and bone. Luckily, My new Dr was on the cutting edge of breast cancer care since we did not have much to go on. We have forged a path and continue to do so today. As I look back now, many of the things she did are what now is considered the treatment of choice! I was never told what I read or researched was not going to work. She would listen and say lets try it and see if you believe it will work. We found some very good things that helped that way and also a few that did not. I have had a mastectomy , a failed tram, due to infection, but had a great plastic surgeon who closed up my chest wall very nicely, and finally at 55 had my ovaries removed since they were still fully functional, so I could go on Aromasin, and off Tamoxaphin. My family has longevity on it's side and so we found my age can not be considered in a lot of decisions (my family is young for their age lol. I have two who lived to be over 100 and many in their late 90's) therefore I had to break a lot of misconceptions. There are no comparisons with cancer! My heart went down to a 21 ejection fx AFTER three and 1/2 years of Herceptin. It also came back to above 60 with rest and my cardiologist's knowledge of medications. I went back on Herceptin. I have developed an allergy to Herceptin now after 6 years but with the help of a very learned Oncologist's suggestions, I am still able to take it, and await Lapatinib. At present I am 6 years NED. Today I had genetic counseling due to the fact I might have the BRACA 2 gene, after someone doing a study looked into my family history. Volunteer for studies if you are able..... I continue to research, my Dr's watch carefully with Pet/Ct and Mugga and now with Elysa/Bayer test for her2 elevation, and we continue to remain aggressive and proactive. Be positive, laugh and learn all you can and strongly advocate for yourself. Also do it now, don't wait for later. It helps to do things you want to do and live your life to the fullest. That positive thinking and the fun you have doing things with family and friends helps you to be strong and healthier.
Hugs from Marily
(6 years living life with love, laughter and going strong.)
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