Renewing BRCA and Triple Negative Thread

Rena

How many cycles of Carbo have you had? Is it a single agent Carboplatin or is it part of a combination?

I am currently on Carboplatin (single agent), will get the 8th cycle (tri-weekly cycle) next week. I have had 2 scans and so far everything has been improving. I am kind of a bit nervous though because while the 1st scan showed spectacular improvement, the 2nd scan showed only moderate improvement.

Wish you the best and thanks for posting that article.

Lisa,
Thank you for that information.
Sincerely,
Traci

Please forgive me for my too long, and wordy replies ...oh well. It's a chemo-brain by-product; reading and thinking is slow as molassis; and spelling has become atrocious, so sorry.

I go overboard on replies; especially this subject (BRAC 1 & 2) regarding genetics as miraculous scientific research continues to produce astounding information about DNA, how our cells function and mutate, and the possible cures which are probable in the future.

Molecular research is so exciting! Indications on recent reports show findings which may prove a way we can prevent mutations from occuring; before the onset of disease triggers a change in the first place! It's a proven and published methodology in the process of becoming reality.

Breast (BR) Cancer (CA) 1 or 2,(BRCA) are early findings in genetic disoveries of mutating DNA, chromosomes, etc.
I truly think we all carry some genetic mutant which has yet to be discovered; so many new discoveries have be revealed as this "new medical science" evolves.

Huntington's Disease led to understanding Alzheimer's, Parkinsons, and other genetic brain disorders.

I am in awe of scientific minds and the knowledge these brilliant minds possess.

Some variations include how enzymes, proteins, hormones, and environment all affect our genetic make-up; giving some hope for those who are aware they may or will eventually suffer from one of these mutations or defective genes.

Let's hope for these miracles; and that a discovery for altering, or even curing it comes about soon!

Cisplatin appears to be the new Taxol, and Taxol appears to be the new Adriamycin/Cytoxin...

Let's all wish for better treatments and diagnosis, for sure!

So happy to hear you are doing well, Renairis! And Bunny, don't feel guilty, please! I really do believe there are unfound cancer receptors which will eventually prove we all must have a defect somewhere; after all, most breast cancers are not hereditary (or so they assume). It's all hypothesis, anyway. As they uncover new details, even more evidence accompanies the research which evolves into what may be a cure.

Don't mind dieing, I just don't want to suffer, suffered enough already!

((hugs))

Be well, be loved, it's a sweet summer day!

Indi

I switched my onc yesterday and was told some details about my gen/testing.
I was informed that i have a BRCA gene variant, so rare that it has only been detected in 14 familes. GREAT, I am triple negative and now this.

I will have my 3rd tx (TC) this Friaday and mastectomy in 4 weeks, hopefully the reconstruction at the same time, so I will not have to undergo another surgery. No one seems to know what this added issue with BRCA can or will do.

Hi Ladies,

Just wanted to know how everybody is doing.

I'm doing pretty good. Still baldish, going through re-construction and, just scheduled my hysterectomy for 10/3.

How is everybody else?

Traci

Hello Everyone,

I am also new to this listserve and just found out that my mom's breast cancer condition is referred to as triple negative BC. She was diagnosed in Feb/07 but we only just found out about the 'triple negative BC' from reading Oprah's magazine. We live in Canada and have not heard about the Cisplatin drug. Is this only available for late stage breast cancer? My mother is stage 2(b). After reading all of the literature on the internet, we now think it is a good idea to have genetic testing done. It seems like there is a lot of negative information regarding prognosis. Does anyone know of any success stories? Do people know if this title of triple neg... is new or has it been used for years? I don't understand why her oncologist has never used the term. Thank you for any info that is provided. Nancy

Thank you so much Ravdeb for your response.  

I have been reviewing the information on the internet this past weekend and it seems as though this diagnosis is not as dismal as I believed when I first read an article in Oprah's magazine this past Friday.  My mother's diagnosis is stage 2, 4 cm tumor, grade 3, mastectomy, chemo and radiation followed. Based on her specific characteristics, she was given the stat that she had a 76% chance of survival once she completed chemo and radiation. This was a computer print out that took into account her grade 3, size of tumor and I am fairly positive that it also took into account er/prog neg and hert neg.  I have read most of the messages on this blog, and remember that this question came up with a few of the ladies.  Anyways, here are a few articles that helped shed light on the issue for me and also provided some encouraging news. When first reading articles on the internet, I kept reading ‘poor prognoses but really they should be writing ‘a poorer prognosis compared to non-triple neg'.  I also wanted to note that it seems to me that only a handful of studies have been done on Triple Neg, is this true? I am wondering how accurate the stats are since there are so many variables involved including race and socioeconomic status.

Article 1

http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCRD&vmview=abst_detail_view&confID=47&abstractID=33252

-During the follow-up periods, 17.3% of Triple Neg BC were relapsed. In particular, 3Years in node negative Triple Neg BC and non-Triple Neg BC were 86% and 96%, respectively (p<0.001). But, in node positive BC, 3Years was not different between Triple NegBC and non-Triple NegBC (80.6% vs. 83%, p=0.99).

Article 2

http://www.hon.ch/News/HSN/603073.html

In terms of income, richer patients were less likely to be triple-negative than poorer breast cancer patients, although the very poorest did not appear to have a significantly greater risk, the team says.

Triple-negative patients were also more likely to be diagnosed with larger tumors and at a more advanced stage of disease, the study found.

As suspected, survival was worse for triple-negative patients than for other patients. Three out of four (77 percent) of patients with triple-negative cancers survived five years post-diagnosis compared with 93 percent of other breast cancer patients.

Non-Hispanic black patients with triple-negative disease fared worst of all, having just a 14 percent five-year survival rate. By comparison, patients with other forms of late stage disease had five-year survival rates 36 and 49 percent.

--this was the first study I came across where race was isolated and there seems to be something going on with the black race. They are unsure whether it is biological or env. So when we read info that triple neg are twice as likely to have the cancer go elsewhere from breast, then we have to remember it is taking into account all races.

Article 3

http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/21119

Relapse rate was34% in Triple NegBC and 20 % in Triple Positive BC (p = 0.04). At a median followup of 40 months, 72% and 80% of the patients in the Triple Neg BC and Triple Pos BCgroups are alive and disease free respectively. The 4year EFS andOS were 64% and 76% in Triple NegBC and 74% and 89% in Triple PosBC group (p= 0.04 and 0.008 respectively).  ---not sure what EFS or OS means?? Does anyone know??

Article 4

http://patient.cancerconsultants.com/CancerNews.aspx?DocumentId=38618

• -After five years 67% (almost 70%!!!) of the women with triple negative breast cancer were free of distant metastases, compared to 82% of the other women.
• After accounting for several other factors that may influence the risk of distant metastases, women with triple negative breast cancer were roughly twice as likely as other women to develop distant metastases.
• Risk of local recurrence (recurrence in the treated breast) did not differ between women with and without triple negative.
• Eight out of ten women with a BRCA1 gene mutation were triple negative. One out of seven women with a BRCA2 gene mutation was triple negative.

Article 5

http://www.curetoday.com/cureXtra/currentissue/archive/jan07/index.html

postmenopausal women, the ovaries no longer release estrogen, but fat cells-although to a much lesser degree when compared with the ovaries-continue to release the hormone after menopause. Interim results of the Women's Intervention Nutrition Study published in 2006 in the Journal of the National Cancer Institute examined if a low-fat diet (defined as having 15 percent of calories or less come from fat intake) affected breast cancer recurrence. Experts expected postmenopausal women with a history of estrogen-fueled cancers to lower their risk of recurrence if they consumed less fat. Surprisingly, while experts expected the ER-positive group to have a lower risk of recurrence, it was the ER-negative group that most benefited from the diet change. Women with a history of ER-negative disease saw a median risk reduction of 42 percent compared with 15 percent in women with ER-positive disease. Final results of the study are still pending.

Article 6

http://www.breastcancer.org/news_research/archives/ask_expert/2006_06/question_15.jsp

Triple-negative breast cancer refers to tumors that are negative for estrogen and progesterone as well as negative for the HER2 receptor. This represents about 15% of patients. Fortunately, this group of patients appears to respond better to chemotherapy than women who are estrogen receptor-positive. Also there are now a number of drugs that are available for this group of patients. How best to use these drugs, and maybe others, remains a question. In addition, we know this group of patients is positive for something on a molecular level. There is research being done looking for genes and proteins to better understand the biology of this group of patients. It is expected that in the future we will have targets to shoot for like we have in other breast tumor groups.

Article 7

http://www.thecancerblog.com/2007/08/26/recurrence-patterns-different-for-women-with-triple-negative-bre/

• The pattern of distant cancer recurrence was different among women with triple-negative breast cancer than among women with other forms of breast cancer. Among women with triple-negative breast cancer, risk of distant recurrence peaked at roughly three years after diagnosis and then declined rapidly. Among women with other forms of breast cancer, risk of recurrence was fairly constant over time.

  

PARP Inhibitor Clinical Trial - Working for Me!!!

I posted about this on the Recurr & Mets section, but wanted to make sure those of you who are BRCA know about the PARP Inhibitor Clinical Trial.  It's also referred to as ICEBERG1.

PARP Inhibitor Pills are NOT chemo.  Side effects for most are pretty minimal.  Req'mts for this trial are BRCA positive (can be BRCA1 or 2) and Stage III or IV ... I'm a BRCA1 trip neg and figure most of you reading this are too ...

After taking 16 PARP inhibitor pills daily for 8 wks, I had my CT Scan yesterday and met with my onc today.   The scan showed a 25% reduction in my lung met, from 2 cm to 1.5 cm!  My DH and I are thrilled and relieved. 

So, I'll continue on the PARP pills and anticipate further reductions in that met.

CalGal 

Hi. I'm 3 neg and will be tested on Thurs for the BRCA gene. Nervous. I am glad this thread is back. You are all so brave! I met with a naturopath and am doing a regiment of supplements including A/O and Q10 and pectin. No quarantees, but I feel good about doing something. Also, I am focusing on excercise including Gigong (or however you spell that). My hair is growing back, but my eyebrows fell out! What the hell is that about! Anyway, I have not given up wine or chocolate. Call me crazy...

PinkL

I found this thread, so I hope I'm in the right place?! Last week I had my phone interview with the genetic counselor and today was my appointment to go over that interview and to get my blood drawn. She had punched all my family history into the computer and I am at 67% for BRCA1 and 23% for BCRA2. She spoke with my sister and I at great length on what all this means. She personally walked me down to the lab for my blood draw, tagged the vial herself and sent it FedEx so it would be at the lab in Salt Lake tomorrow morning. Now the wait is on. I have a follow up appointment with her on June 2 to get my results. If I am BRCA1, I will have a total hysterectomy, at the geneticists recommendation.

I have very mixed emotions. If it's genetic, I may have passed this on to my 4 kids and 3 Grandchildren. My two sisters may have this. After having Cancer twice, this would answer my questions as to where it came from. If I test negative, then I am a fluke. I'm praying I'm a fluke...

Linda

Eyes,

If I test positive for BRCA1 or 2 I will have a total hysterectomy. It's been recommended by my genetic counselor to have everything removed and I agree. My old OB/GYN "missed" the second year I tested positive for the HPV virus and brought it up after I tested positive the third time. After chemo ended, last August, I had to have a cervical biopsy. Luckily, it was fine.

My genetic counselor said that she wouldn't even test my daughters until they are 25. My oldest daughter has already said that she would have a bilateral Mastectomy after she has kids, to, hopefully, prevent getting Cancer. I have two daughters and two sons. My oldest son's father died of pancreatic cancer at 48. My counselor is very concerned for his health, especially since he smokes. Try telling a 32 year old how to live.

I don't think we like to worry, I think we like to gather our facts and educate ourselves on things that "could" happen. I'd rather have knowledge than be broadsided.

My paternal grandmother died of BC and my sister was diagnosed at 36. In September she'll be a 19 year survivor! My dad has had colon and kidney cancer. Because of me being diagnosed with two primaries and one of them a triple negative, my percentage shot way up...

Linda

So it is now official. My genetic testing results came back and I am BRCA 2 positive. With my geneticists recommendation I will be having a total hysterectomy at the end of June. I'm going to wait to tell my kids after my youngest child graduates from high school next month. This is her time to shine and celebrate and not have to deal with my health issues, again.

These results answer so many questions I have had. My personal and family history are so strong that I "knew" I couldn't be that much of a fluke...

Linda

Hi ladies:

My mom is triple negative.  She is 67 years old and just got diagnosed -- the oncologist says that most triple negatives are for young women, not 67 year old ones.  ... Should my sister and I get tested for the BRCA gene?  Other than my mom, we really don't have a history of breast cancer, or any cancer in the family, but I was reading how BRCA and triple negative are related.  I have 2 young daughters, so this is a concern.

Patty

Patty -

You mentioned that there is NOT any other cancer (besides your mom's) in your family.   Chances are great that there is not a genetic mutation lurking.

While 80% of BRCA1's are triple negative, it does not go the other way.  The overwhelming majority of trip negs do NOT have the genetic mutation.  Only 5-10% of bc is due to the BRCA mutation, and that includes both BRCA1 and BRCA2.

For those who are BRCA1 positive, the chances of bc are very high at every age group.   For example, the average woman has a 1 in 8 LIFETIME chance of bc.  Those who are BRCA1 positive have a 1 in 5 chance by age 40, a 40% chance of bc by 50 and an 80% chance of bc by age 80!  We also have much higher rates of oc too.

I understand you being concerned for yourself and your daughters, but chances are that your mom's bc is not BRCA positive.   That said, you may wish to discuss this concern with a genetic counselor.  That is always the first step ... you can't even get the test until after that ...  

CalGal