Today on Good Morning America, Maalak Compton-Rock was on speaking about triple negative breast cancer and the foundation that was begun by a group of women who were all affected by their friend who was afflicted with the disease.
There is a lack of knowlege about this disease. It is a breast cancer that is resistant to the typical courses of treatment that is recommended for breast cancer. It is important to create an awareness so that those affected by this type of cancer don’t waste critical amounts of time treating their cancer ineffectually, thereby decreasing their chances of survival. Many have the disease but, are unaware; and, could be better informed so that treatment could be tailor made to improve their success. This is the first time that i have heard of triple negative breast cancer and even then, i wasn’t clear on what i heard.
In fact, i believe that Robin Roberts made a casual remark that this is the type of cancer that she is dealing with; but, she made the comment in such a casual way that i am not sure.
Robin is a woman that goes out of her way not to draw attention to herself; but, she has made concessions in some areas that are important to her, such as her battle against cancer and her work on the rebuilding on communities that were devastated by hurricane Katrina. The allowances she has made are only in her quest to help draw attention to the issues at hand…not to herself.
Malaak does many good and charitable works. She is the beautiful wife of Chris Rock and together they are proactive in their charity fundraising and community work. She is passionate about the work she does and is dedicated to giving back. If you go to Malaak’s website at : www.angelrockproject.com/ you will find many worthy non-profit organizations to help support. They not only give money, but time and attention as well; it is an inspiration to us all to do the same.
In regards to the triple negative breast cancer awareness…her website gives access to the website for the foundation that was created in honor of her friend Nancy Block-Zenna. It was Nancy’s desire that a cure be found so that others did not suffer as she herself suffered from this disease. From her mouth to God’s ears. The foundation can be found at: www.tnbcfoundation.org. Thank you Good Morning America, Robin Roberts and Malaak Compton-Rock and all of those doing research and healing in these areas; God bless you and your work. Update: see this interesting possibly related information https://writeasrain.wordpress.com/2008/05/16/women-are-dying-for-size-of-level-d-when-it-comes-to-breasts/ Please note: I have moved my blog to: http://www.writewhereyouareblog.com Please addd me to your RSS feed. Thanks!
Write where you are 
[…] a group of women who were all affected by their friend who was afflicted with the disease. … credit : […]
Thanks for posting this and thanks so much to Robin Roberts for her candor about her own triple negative cancer and for the support of Malaak Compton-Block. By the way, I’ve shed quite a few tears listening to Robin share her own journey in her personal battle against breast cancer.
I was diagnosed with IDC, triple neg, 1 cm that did not spread to my nodes in Sept 07. I am 60 years old and chose to have a bilateral mastecomy so fortunately did not need to do radiation. Because of the triple negative aspect , it was strongly suggested that I do 4 rounds of Chemo 3 weeks apart which I began in Jan 08. Today is my last chemo tx. However, I will probably do my best to remain optimistic but am very nervous about the possiblity of any cells that may have escaped and that the chemo did not get because of the aggressiveness of triple negative.
My chemo cocktail is a good one and I’m at a teaching university that is very respected but a couple of the more cutting edge chemo drugs that are being used in clinical trials in an adjuvant setting for triple negative were rejected by my insurance as being “experimental”. The public needs to be made aware of the differences between this kind of bc and that which is ER+PR+Her2neu+ which has other options than chemo for treatment.
Thank you so much for bringing this particular type of breast cancer to the public. I am greatly apprecative to see it addressed.
Carol C.
Omaha, NE
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[…] admin wrote an interesting post today onHere’s a quick excerptToday on Good Morning America, Maalak Compton-Rock was on speaking about triple negative breast cancer and the foundation that was begun by a group of women who were all affected by their friend who was afflicted with the disease. … […]
My heart goes out to all women with cancer – especially those like Carol who are battling even stronger forces of this disease! I wanted to share a link to a video of an event that I am passionate about. I hope you enjoy:
Thank you for sharing this video and info regarding this important event and for your compassionate words. I wish I lived closer so I could attend…I used to live in the NYC metro area but alas, I’m now out in Nebraska.
Good luck.
Carol
To all my sisters affected by triple negative breast cancer. I am 43 years old and was diagnosed 2 years ago with this type of breast cancer and it is scarey, especially when you look at the statistics. I want to send my prayers out to all of you. I was treated with chemo, bilateral mastectomy and radiation. So, I pray everyday for a breakthrough, but you know what, keep strong live and love life. Most of all when you wake up thank God. Love you all.
I want to thank Carol Chandler for her information about the latest cutting edge drugs (clinical trial phase 3 drugs-?) that are being given by some oncologists to treat triple negative breast cancer. i am glad that you wrote that the insurance companies are not covering these drug expenses because they are considered experimental at this time-i needed tro know this fact. when i first found out-several weeks ago-about these drugs that are sometimes available-depending upon which oncolgist and hospital you go to-i was very upset that my oncologist did not offer this option to me (i have since had a change of mind on this issue). the first oncologist i consulted-whom i did not use-did offer clinical trials-but i only saw her one time and never got the specifics about what she was offering. my oncologist chose the standard form of chemotherapy that is given for triple negative breast cancer as well as the positive receptor breast cancers–adrymicin and cytoxan-4 rounds, and then taxol-4 rounds-administered every 2 weeks until completion. were you treated with these clinical trial phase 3 drugs or the standard chemotherapy drugs? were you treated at M.D. Anderson Cancer Center in Texas
by any chance. is there a way that i can get in touch with you.
Thank you.
Barbara S. Diagnosed on July 27, 2007 with triple stage negative b.c.-stage 2B – BRCA 1 & 2 negative. unilateral mastectomy performed on Aug. 15, 2007. 3 breast lymph nodes positive. no axillary lymph nodes involved-all 17 that were removed tested negative. Chemotherapy compled on Dec. 20, 2007. 6 weeks of radiation treatments-30 in all-completed on
February 21, 2008.
Hi Barbara,
I finally went to the Director of the Eppley Cancer Center at the University of Nebraska Medical Center for a second opinion. My first oncologist was very dismissive and naive about triple negative – he was going to use the same old, same old chemos. My new oncologist was nationally renowned, came highly recommended and used to head up the breast cancer research dept at the Cancer Institute in Bethesda MD
I chose not to do adrymicin because of it’s cardiotoxicity – I have a family history of heart disease. My first onco thought I was crazy but the second was willing to consider much more cutting edge tx. All insurance companies are different – but mine has a reputation to be particularly provincial and tough on anything that isn’t mainstream. Hate to name namesl my insurance is through Coventry which used to be Mutual of Omaha.
Please feel free to write privately to me or join the online Triple Negative Foundation at http://www.tnbcfoundation.org/index.html
I’ve learned lots of information that I use to make decisions about from there and it’s the organizationn that Chris Rock’s wife Maalak was promoting on Good Morning America.
Carol
feel free to write to me privately as well.
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I am heartbroken…today….we lost a loved one to breast cancer. She was a very young woman, who fought with everything she had! We love you and miss you already Angie!!!
my wife has trip neg but cant take chemo AC. ALMOST DID HER IN. IM SCARED. SHE IS STAGE 1 BUT SHE IS NOT AGGRESSIVE WITH IT. DONT EVEN HAVE ONCOLOGIST.
TONY LUPIS
TBI—tbi110@yahoo.com
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I was diagnosed with triple negative breast cancer June 2008, had a lumpectomy, double mastectomy, completed AC already (hated it) and just started my cycle of Taxotere. I have to say this drug is unbelievably tolerable compared to the AC treatments I just completed – I feel for those who are suffering from the side effects of any chemo drugs as they are all horrible.
I am 37 years old and found the lump myself this past summer (very important to do self breast exams and not just rely on mammograms). I had no idea what to do first and finally was directed to see a breast surgeon. Because of my age, he encouraged me to be DNA tested for the BRCA gene. By the way, you have to “qualify” for a special test in order to get the right panel so be sure you understand this if you fall into the category of possibly being BRCA positive.
While waiting for gene test results, my surgery was on hold in case I wanted a mastectomy, they wanted to remove lymph nodes for testing at the same time. I had one positive lymph node out of 21 removed under one arm. (When you have your nodes removed be sure to read about Lymphedema because they will not educate you on this either…) In addition, my tumor was an aggressive grade 3 tumor – which was discussed in my first meeting with my chemo doctor – this aggressive tumor prompted the need for the Taxotere to follow AC.
Once discovering that I had the gene I had to make a decision in addition to chemo. It was no longer as simple as a lumpectomy but the idea that the cancer could come back and attack my breasts again. Therefore, I bravely opted for a double mastectomy and will most likely have my ovaries removed within the year.
The DNA results were very high for both breast and ovarian cancer…about 50% for each. I completed the mastectomy in Sept 2008 with about 2 weeks recovery time. I am currently in the process of tissue expansion and will undergo the implant surgery once I reach my ideal size and have finished chemo…Feb 2009. I must admit that it really took a lot of research of MY OWN to understand what triple negative breast cancer meant, the tumor grade, the reconstruction, where my nipple was going and why… etc. I asked so many questions (which doctors are reluctant to answer) and searched online for everything I needed to know and what I needed to explain to my family. I am a single mother of an 8 year old child who has just been incredible throughout this entire process. What a wonderful reason for waking up in the morning.
For those of you who are not getting your questions answered about anything, even breast reconstruction options, be persistent because it matters. My mother didn’t have choices 25 years ago and went into cancer treatment basically blindfolded. She too is a strong woman who raised a family on her own. How has this affected me? Emotionally, I’m over it – I must wake up every day and take care of my child and get to work and be functional, there’s no time to sit and cry anymore. And now, there is a strange content feeling that has overcome me while going through this – perhaps it’s the change of the drugs (I can finally eat and work out again), or me nearing the end of chemo, perhaps it’s the idea of starting a new life and seeing things just as they are and accepting them.
I know I can honestly say that I’ve done everything I can in making the boldest decisions regarding this unfortunate disease including making the decision to remove my breasts even after a successful lumpectomy. If the cancer comes back, then I may consider an alternative treatment – at that point I would say chemo didn’t work as it was supposed to…we won’t go there. For all of the women going through this who’ve lost their looks, husbands, material things, whatever, you are wonderful and strong and haven’t lost anything – you’ve quite possibly gained the perspective on life that most people only dream of having. Hang in there!
Thank you for writing about triple negative breast cancer. I was told in September I had it. It was very emotional and answers were had to get. I thought I would have radiation and take a Pill and I would be fine. When I was told I had to take chemo, it knocked my feet right from under me. Why chemo them I found information on the web and I understood there is not a medicine that would help me.
I’m under going ac now and it wipes out my white blood cells and I get very tired. This will be my third treatment and they are going to reduce the dose again. I was encourged to hear the taxel might be easier to tolerate.
I have limpedema and i’m using a pump. I wondered if I should be tested for the gene. I’m 64 but never breast feed my children.
Reading you comment was very uplifting for me. I too worry about reacurance.
God Bless all of you. And keep a positive thought. Some times it is hard because you have to stay away from people you love because your wbc is low. WE WILL SURVIVE WE WILL MAKE IT.
Sandy Elser
Hi Sandy:
I just wanted to thank you for commenting and sharing your story on my blog post about Triple Negative Breast Cancer. I am sorry that you have had to battle cancer. I am glad that you found my post and the comments there. I am happy to hear that you found some comfort from the site.
I know that being separated from friends and loved ones, because of the danger of infection, is very hard. I hope that you have many people loving you and supporting you through this time. Thank God for computers and phones to be able to stay in touch. The support is very important to keep your energy and your spirits up. I am a Christian and believe in the power of prayer as well for healing. Hang in there…keep fighting and I thank you for supporting others in your comment. God bless you and your path to wellness.
Sincerely,
WritewhereUr
http://www.twitter.com/WritewhereUr
http://www.writewhereyouareblog.com
http://www.writeasrain.wordpress.com
I am a 38 year old African American women who was diagnosis with breast cancer right before thanksgiving 11/23/09. I found the lump myself during a self-exam, two weeks prior to diagnosis. I had a mastectomy new years eve 12/31/09, and the lymph nodes removed were negative, and 1.7 cm (Stage 1); yet, my doctor suggest that I get the most aggressive chemo treatment, since the disease is so aggressive and have high chances to return. Althought I am getting a second opinion, the plan is to start chemo in a couple of weeks (8 treatments every other week). Once I complete chemo I will have double mastectomy and reconstructions. I am healthy women who workout and eat healthy. I am very spiritual and have faith that God will cure me and be there for me while I go through the biggest trial of my life. “God is good all the time”
I diagnosed with TNBC in August of 2008. I underwent 4 sessions of Taxotere and Cytoxan and was told by my oncologist that I was cancer free. I made each 90 day follow up visit and all outward appearance was great and blood test great. Coming up on my second year of being cancer free I told my oncologist with TNBC listed as an aggressive disease some other type of testing should be done. The oncologist ordered a CAT scan which came back with cancerous lymph nodes on the right mediastinum (original site was the right breast). It was explained to me diagnostic testing is not a routine part of the follow up protocol for BC and TNBC. I have moved my treatment to another cancer facility and I have started new chemo treatment. I would like to know what type of follow- cancer care for TNBC anyone else has gotten. Make it a great life and be Blessed..FB