CURE COMMUNITY
Finally, good news for triple negative breast cancer patients!
BY SUSAN MCCLURE | JUNE 9, 2009
During ASCO's annual meeting this year, I was thrilled to learn that a new drug class is offering promise to patients with triple negative breast cancer. PARP inhibitors--experimental targeted therapy medicines, may make chemotherapy work better against aggressive forms of breast cancer (see Debu Tripathy's blog for the details). For years, I've been happy to see great advancements in the treatment of breast cancer, but have selfishly been concerned that no real progress was being made to better understand triple-negative cancers.
When I was diagnosed with breast cancer back in 1994, the term "triple-negative" breast cancer didn't exist. Diagnostic tests weren't as sophisticated as they are today. I did know that I was estrogen receptor-negative and that while my cancer was aggressive, it hadn't spread to my lymph nodes. I had surgery, chemotherapy, and radiation. Within six months my treatment was over, and I was told to get on with my life. Six months of treatment and I was done. So why were some of my friends, also estrogen receptor-negative, not so fortunate?
It was years later, during a routine check up with my oncologist that I asked him to review my pathology report to see if he thought that I might have fallen into the triple-negative camp. After close examination, he shrugged his shoulders and said that, most likely, I did. To be sure, they'd have to go down to the basement of Baylor, find my 12-year-old tumor, and run it through the gauntlet of diagnostic tests now available to determine such things. Eeek.
I've been cancer free for twelve years. I've lived with never really knowing what caused my cancer. I've lived with the fear that it might return--as we all do. I've lost friends with triple-negative breast cancer who ran out of treatment options far before they ran out of hope. For me, this new development honors their memory.
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This is great! No, FANTASTIC!! I too was diagnosed with stage II triple negative b/c in 2002. My treatment was surgery,chemotherapy (4), radiation (36), Aromasin (5 yrs).
The thought of recurrence is always with me. I still don't know what caused the cancer; probably never will, but it's good to know research is continuing and there are more options.
I will continue to walk, run, lobby, whatever it takes to help find a cure or treatment.
- Posted by Gloria D. 6/11/09 1:49 PM
It's great news to know that there are studies being done for patients that are triple-negative such as myself. I was diagnosed in March 2009, had surgery and have had 2 of 8 cycles of chemo with radiation to follow. I too will run, walk, trot, gallop or ride my bike for a cure!! Whatever it takes, we need a cure!!
- Posted by Suzanne Williams 6/11/09 4:26 PM
I also was dx with triple negative breast cancer three years ago, stage I , sentinel node biopsy negative with tumor removal. Did the radiation but declined the chemo, will save it for later use if necessary if and when it comes back. I'm thrilled that some progress might be in the makings for the 20% of us who get this type of breast cancer. Carolyn
- Posted by Carolyn Potts 6/11/09 5:59 PM
I was dx triple negative 12-2002. Had chemo 5 different times for recurring tumors. Had radiation for 7 weeks after the 1st chemo. Had Radio Frequency Ablation for 5 tumors in lungs and 1 in breast. Recently had Stereo-tactic Radiation in for breast cancer in the lung.
Is it way too late for PARP inhibitors for me? I'm game for anything about now.
- Posted by Barbara G 6/11/09 7:32 PM
I was dx with stage IIB agressive triple negative breast cancer in 2006. 1 lymph node involvent. Treatment included 2 surgeries,chemo and radiation. After treatment completion I was sent home with "Evista" to return to my normal lifestyle, without knowing what caused my cancer.Recurrence is always in the back of my mind to. I am excited that more research is underway for triple negative cancer patients.
- Posted by Elizabeth Ruse 6/11/09 7:35 PM
Yet another woman diagnosed with stage 1 (sentinal node neg.) triple-neg breast cancer, Nov. 2005. Treated with modified radical mastectomy with immediate reconstruction then 6 months of chemo (Adriamycin/Cytoxan followed by 12 weeks of Taxol).
I completely identify with the previous poster who felt dismayed at being told to "get on with her life" after treatment ended. I was in fight mode, my e-mail support team was named "Team KCA" (Kick Cancer's A$#).
I was fortunate enough to locate a clinical trial using simvastatin to attempt to prevent recurrance in high risk women, & participated in that for the entire 6 month trial period. With all doctors agreeing, I continue on simvastatin for this reason: the drug is easy to get, cheap, won't hurt & might help. The only draw back is explaining the off-label use-providers immediately assume that I'm using it to control cholesterol.
The sad fact is that no one really knows what causes most cancers. Early on, I decided that I was not going to spend time "Monday morning quarter backing", condemning previous informed choices I had made as the possible cause for my cancer. That freed up a lot of emotional energy to work with the chemo & focus on getting well.
One note about chemo-it was not nearly as bad as I'd feared. As a health care professional, I thought I "knew" chemo's side effects. What I now know is that chemo tolerance is very individual. I went home & shoveled snow after my first chemo. I had delayed nausea for the A/C rounds so with treatment on Mondays, I could pretty much feel good until about Wed. mid-afternoon. That's when my Zofran use would kick in, for a few days until I felt better for about a week at which time the whole cycle would begin all over again.
My point here is that there are treatments available to handle the side effects of chemo, removing chemo for the place previously reserved for the word "cancer" when it was whispered with awe & fear.
Triple negative breast cancer was no picnic and the concern is always there about recurrance but I am so pleased that medical science and treatment has advanced to this point. Here's to looking forward!
- Posted by Dale Ashera-Davis 6/12/09 5:16 AM
I too was diagnosed with triple-negative cancer, Stage II, right breast in 2002. Did the lumpectomy, six months chemo followed by radiation. All going well till five years later, diagnosed with a second breast cancer - secretory carcinoma in left breast, stage 1. Opted for bi-lateral mastectomy and feeling great until 1 1/2 later when pain in chest promted visit to my oncoligist. Stage IV breast cancer, metastized to the bone, triple negative. They figure it's the first cancer that has come back. Am on clinical trial currently for past 6 months, using taxol and avastin (with zomeda once a month for my bones). All scans seem to show good results - bone regeneration. But it is extremely relieving and positive to read about new findings concering triple-negative breast cancers. I will have to share this article with my doctors to make sure we have back-up plans just in case!! Thank you!
- Posted by Gyda Higgins 6/12/09 8:37 AM
please use the prior comments
- Posted by Rhonda Boisvert 6/12/09 2:40 PM
As so many others, I was diagnosed with triple negative breast cancer in 06/2000. I had modified right mastectomy. No lymph node involvement. Chemo was - 4 rounds of AC followed by 4 rounds of Taxol. After that 35 radiation treatments. My doctor also told me to continue my life. It was upsetting that there was not much done for triple negative cancer at the time. I was cancer free until 12/2007. I just felt like something wasn't right. It had returned to my left lung. I had 1/2 of the lung removed (02/2008). I participated in a clinical trial using Abraxane along with Avastin. I've had good results. As of this month I've been on this regiment for 1 year. I am hopeful that treatment/cure is forth coming. We have to stay strong and fight.
- Posted by Pam S 6/12/09 11:22 PM
Yes, absolutely we must stay strong! I too, was told in the fall of 2004 I had invasive breast cancer. Was also told "no hormonal markers of any kind". Was that a good thing I wondered? Lumpectomy was an option, chemo and radiation were both recommended. No lymph node involvement, opted out of chemo as I "didn't have the time to be sick" from chemo side affects. Completed a full 30 days of radiation. Shortly after, skin cancer was found on my leg - which was removed. Now there is a name for the type of breast cancer I had (have?) - "triple negative" and the only effective form of treatment identified at this time is some form of Chemo. Needless to say, I now know my treatment of choice was a bad one (no chemo) but I based it on what info was available at the time - which was nothing. Yes, I absolutely will remain strong but along with all the strength comes fear - a well-hidden fear - that no one knows except me. I hope and pray everyday the cancer does not come back in some other place in my body as "triple negative" is known to do. But at 54, with a family history of breast and ovarian cancer (my mother died at age 45 of this), I am a survivor and as each day passes - I am grateful and blessed - and will continue to show my strength and hide my fears!
- Posted by Rhonda Boisvert 6/16/09 9:48 AM
After hearing the news this evening on NBC relating to PARP inhibitors, I am doing a research on it and found this site. The drug seems to be effective in Triple Negative Tumors.
I am a young, healthy, retired nurse, 70 years old, diagnosed with Stage IIB, moderately aggressive triple negative invasive ductal carcinoma with 1 of 12 lymph nodes involved. I had a mastectomy and node dissection on April 21st and have taken time to research this and gain medical and spiritual advice. I also got a second opinion. The best guess from statistics is that I have a 50% chance of cure and the other 50% can be reduced by 25% with chemo. I came very close to not taking treatment but decided on the basis of being triple negative and realizing these tumors are very aggressive, I have chosen to take chemo (FEC+T) are what are recommended at my Cancer Center. This will be followed by radiation. I had my first chemo yesterday and with the new drugs am so far tolerating it very well.
I am following this research very closely for only God knows what the future will hold.
I would like to add a "political"note - I live in Ontario, Canada and please don't believe all that you may hear in the U.S. about our health care system. All my treatments have been very rapid - it was me that held them up until I was sure of what I wanted to do. Yes, one does wait for non-emergency surgery, depending on where one lives. Most of my drugs are free; we have a private insurance to cover the balance. And we DO pick our own doctors!
Good luck to those who have written before me - I strongly recommend Dr. Susan Love's Breast Book for every woman to read. It is due for an update (she does one every four years) but it is full of wonderful information.
Claire
- Posted by Claire Nault 6/24/09 7:22 PM
My sister was diagnosed with triple negative breast cancer stage 2A in 2007. A year later she finished her treatments and was given an excellent prognosis. She did not make it. Less than a year after her chemo/radiation/lumpectomy was finished she died. And she died suddenly--from an aggressive spread to her liver. She felt great and was involved in all her usual activities and then BAM! She woke up one morning with yellow eyes and died less than 3 weeks later. It is a horrible disease with few specific treatments. She leaves behind a shell-shocked 12 year old daughter and a stunned family who had no idea she was dying until the oncologist told us the day before.
- Posted by bg 8/22/09 5:59 AM
At age 59 in2004 was diagnosed with triple-negative stage III invasive ductal carcinoma and sentinal lymph node was also cancerous. After mastectomy had AC plus 6 months of taxotere. Went back to work. Had breast reconstruction in 2006 and then in summer 2008 had pneumonia twice that summer, somebody finally decided maybe I needed a chest x-ray and it, plus biopsy revealed spread to lung and bones, so it is now stage IV. Asked about a trial and began taxol with sutent which is similar to avastin in that it is to stop the blood flow to the tumors. It has reduced, but not eliminated the tumors, and told nothing else to do. I've been on the trial for 14 months and have fatigue and pain from the treatments, as well as blood clots so have to take coumadin every day and with the chemo that is not under good control. I am disabled but able to care for myself. I'm actively looking for another trial to try if this stops working. I was told the longest it's worked for far in 14 months.
So I'm on the edge, although thinking I'll break a record! These postings are very helpful. Please if anyone out there has triple negative post your story, it may help someone!
- Posted by michal poe 9/14/09 11:46 AM
I was diagnosed with inflammatory breast cancer Estrogen positive in 2004. Following chemo, mastectomy, radiation adn more chemo I got on with my life; always hoping that the Aromasin to block the estrogen would keep me cancer free. On my routine Pet scan in March 2009, a hypermetabolic lymph node behind my sternum was found. Upon biopsy it was determined to be a higher grade(less like the original breast cancer) triple negative breast cancer. It had morphed from an aggressive tumor into something more aggressive (and not estrogen supported) and what I felt would be harder to treat. Well, the reason I am writing this is to give some positive news. I have been treated with Taxol and Avastin (although I do not like the side effects at all) the last 2 Pet Scans have shown NO evidence of hypermetabolic activity. In other words NEGATIVE!! Do not despair!! There is treatment that is effective and although there are no way to know if it will work; the important thing is to be positive. All the best to everyone drawn to this site.
- Posted by Patty Ramos 9/20/09 4:40 PM
I too, was diagnosed with "no hormonal influences" breast cancer in 2006. It was something called "metaplastic " breast cancer, stage II only because of size , with lumpectomy, chemo(cytoxan and taxotere), and radiation for 6 weeks,no involvement of lymph nodes.So far no more tumors and hopefully will have none ever again . Nice to know it now has a name ,triple negative.
Apparently metaplastic has the characteristics or aspects of two or three types of cancer, never was told which ones they were but I guess the doctors did not know what to do either so I had a lot of input into my treatment and chose those two chemo drugs mainly because they would not have a bad affect on my heart and might have an effect on the cancer. So far ,so good.
I pray that all who enter this site with cancer, leave it with renewed hope .
- Posted by Linda Filman 10/13/09 9:32 AM
Christmas 2007 I woke up with blood on my shirt. The triple negative stage 3 tumor wrapped around my milk ducts thank goodness. I had six rounds of TAC and a mystectomy. If i had know what triple negative was i probably would have had both breast removed. I was shocked when chemo was over and there was no after care program other than seeing the doctor every three months. I found a trial one study polphenon E study in Houston Texas sponsored by Columbia.(6 month study).
We all are waiting for the PARP inhibitor as we fear recurrance. I pray it will be approved in time...
I am cancer free now and I refuse to leave my three children without a fight.
Vicky Rollins
- Posted by Vicky Rollins 10/13/09 10:08 AM
I, too, am a triple negative cancer survivor. I was diagnosed in October 2008. I have undergone 4 treatments of taxotere, 8 treatments of gemzar, 4 treatments of adriamycin and cytoxan and avastin before and after a bilateral mastectomy. I am a part of a clinical trial and still undergoing the avastin treatments, which consist of 10 treatments after surgery. I was made aware early that triple negative is aggressive so I was aggressive in choosing a bilateral mastectomy. It has been a year since I was diagnosed and my faith in God has sustained me. I would be lying if I stated that I do not have any fears because, sometimes, I do. Right now I am experiencing shortness of breath, lung density and shoulder pain. I have had CT scans and my doctor says that the lung density does not mean "lung cancer." In the meantime, I am praying and trusting God that cancer will forever remain in my past. God bless each of you dealing with this disease and I, too, am happy to hear about the PARP inhibitor.
Sharon Tarver
- Posted by Sharon Tarver 10/13/09 1:44 PM
I am writing about a survivor...my mother - She had a normal mamogram in October '06 - in May '07 she learned a hard golf ball sized mass under her arm pit was not a fatty tumor, but rather triple neg breast cancer which had spread to to her lymph nodes. She also had two dic tumors in her breast. Her course of treatment was the two main chemo agents (adrimycin? and taxol?), mastectomy and radiation - and one year in a clinical trial of avastin receiving it every 3 weeks. She is cancer free as far as we know and it has been 29 months since diagnosis. She is now 64 and works five days a week. Her triple negative cancer was in stage 3 - grade C and the whole golf ball sized mass in her axillary nodes was considered a grave sign...but we keep hoping avastin is the miracle drug that choked off the blood supply to any lingering cancer cells that first year. We also hope that an aggressive cancer like this could not be "hiding out and growing slowly" so maybe it really is gone! Mom does not like using the internet, but I know she believes in Avastin being a cure drug! I hope anyone reading this has access to it and that it works just as well.
Lisa in Indianapolis
- Posted by lisa rochelle 10/22/09 7:47 PM
March 2009 I was diagnosed with TNBC on my left side, stage 3c also. I was 30 years old. I was just in time for this study, the BSI-201 (parp inhibitor) in Stanford, CA. I feel it was a blessing to me, it was paired with gemzitabine and carboplatin. I had 16 treatments total, and I had a lumpectomy following chemo, and I had my lymph nodes removed. One lymph node had a 2 mm cancerous spot. There was 1cm of cancerous tumor left, it was 3.5 cm. I am currently finishing up radiation, I have 4 treatments out of 33 to go! My biggest fear is the cancer coming back and of course the statistics of year survival rate and 9 months from the time of your 2nd recurrence. I am horrified at the odds of recurrence! So I will try to take day by day as a gift and enjoy my hubby and my 3 kids, ages 13, 7, and 8. Please let us continue to pray for each other and pray for those working for a cure!
Eileen, Eileenvt528@aol.com
- Posted by Eileen 11/1/09 1:42 AM
i just lost my 39 years old daughter from TNBC. I can't understand why isn't a data base where ALL doctors could provide and be provided with the most successful drugs available. I feel that too much time was lost. I can and maybe will write a book regarding health insurance, the professionals, some good most uneducated toward this particular illness, the careless to see a patiente if happens to be a problem on a Sunday or other Holiday.My daughter had a lung blockage on a Sunday but the doctor insisted that she will be seeing on Monday. Monday morning she wasn't able to breath , she died the next morning gasping for air.
I know my daughter had a terminal illness but the doctor's could do more to allowed her to lived a little longer. We need a data base with information from all over the world. We need to work together so this doesn't happens to anybody else. (no for the reason that did)
I don't expect you have this letter for everybody to reed it, to the other hand people going through the same illness needs to know that doctors are no God, second opinions should be mandatory And insist on every drug and treatment available.
We left my daughter's body yesterday at the cemetery and yes, I am terrible sad and I am terrible upset. If somebody knows who I need to contact to start helping to make this easier for the TNBC patientes, please let me know.
Sincerely,
Marina Georgiev
- Posted by Marina Georgiev 11/8/09 8:18 PM