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BY ELIZABETH WHITTINGTON | MAY 1, 2012
As of this posting, nearly 40,000 people have viewed Darlene Gant's plea to the FDA on Youtube. Gant has metastatic breast cancer that has spread to her liver. She is asking for the release of the investigational drug pertuzumab to her on a compassionate use basis.
She writes:
"I am stage 4 breast cancer and am in final stages. I have a beautiful son, Cameron age 11 that is watching me die little by little each day, as well as my husband. It is tearing us up and so many other families are going through this too. The most unfortunate part is that there is a very promising drug for me, Pertuzumab that the FDA is just sitting on since December and does not plan on releasing it until June 2012. I am not expected to make it to June, my liver is engulfed with tumors and I am wasting away. In this video, which we did not plan, I am reading cards that I have filled out for my son from age 12-25 for birthdays, graduation, wedding et.... I am trying to leave him pieces of me to comfort him and let him know how much I love him - he is my world. I can handle dying but not leaving my son. You see I want to finish my mission here and raise my baby to manhood. For years I have watched other women die waiting on the FDA to release a drug that has concluded all their trials and data and they would not give the drug for compassionate use then either. I do NOT qualify for any trials as my disease has progressed to much. We must stand together and not let anyone else die WAITING. Please help by passing on this video link and writing to your local congressman or senator. Support the NBCC, National Breast Cancer Coalition as they are fighting for us and with us to make compassionate use a standard. It may be too late for me but there are so many others waiting and yet to come. Blessings."
Pertuzumab, which is expected to be approved by the FDA this summer, has been shown to delay disease progression in women with HER2-positive breast cancer, but it's not known if it will work for Gant's cancer. However, after weeks of public pleas, most likely generated by her video, Genentech, the drug's manufacturer, has allowed Gant to receive it before final FDA approval. (The FDA also approved the compassionate use of the drug.)
There are a lot of questions raised by Gant's case: Why does the FDA wait on approval decisions when it is apparent some drugs are better than what's available (pertuzumab was given priority review, which means it was reviewed much faster than the traditional route)? Is the use of social media appropriate in asking for compassionate use (when typically it is the patient's physician who works with the pharmaceutical company to get access)? And can anyone fault a patient for trying each and every way to cure their disease?
What would you do?
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BY ELIZABETH WHITTINGTON | APRIL 11, 2012
I recently went to the doctor for a past due exam – all clear, but the doctor reminded me that I would need a baseline mammogram at age 35.
"Umm ... 35? I thought it was 40 or 50? Why do I need a mammogram so early?"
"That's just what we do here," she replied.
To my doctor's credit, I didn't question further about why a baseline mammogram is the norm in her practice, or what benefit it would give me. But I did want to do more research before I made a decision.
Let's be perfectly clear. This is a baseline mammogram we're talking about. A baseline mammogram is taken first to compare to future mammograms when a woman decides to begin routine screening at 40 or 50. There's no evidence that this comparison between a baseline mammogram and the first routine screening holds any benefit. In addition, the baseline mammogram isn't looking for anything at this point.
I have no family history of breast cancer. I don't have a suspicious lump or any other symptoms. I don't have dense breasts.
I checked with my insurance company and they cover mammograms, regardless of age or reason. However, I can't find a professional group that recommends a baseline mammogram. The American College of Obstetricians and Gynecologists don't recommend them unless there is a family history. The American Cancer Society recommended baseline mammograms several decades ago, but removed it back in the early 1990s.
So, why do some gynecologists still recommend them?
I talked with Dr. Len at the ACS and he gave me some important background. He said the ACS recommended baseline mammograms from 1980 to 1991 because of the belief that they could help detect cancers in the future – comparing the mammography images from baseline and those taken later. (Here's a chronological depiction of the various guidelines from the ACS over the years.)
Unfortunately, he says, baselines mammograms didn't help find cancers. Many times those baseline images weren't even available to compare with later images, and ultimately they just didn't prove to be very valuable.
Women depend on their doctors to understand these guidelines and they should be comfortable being able to discuss the pros and cons with their patients, Dr. Len says. And an answer of "That's just what we do here," isn't helpful.
This isn't to say I don't think young women should be screened for breast cancer. I know several young women who had symptoms, a family history or just a nagging concern that something was wrong but had to jump through hoops to get a mammogram or other screening test to finally diagnose breast cancer.
When I asked on my Facebook page what other women thought of baseline mammograms, it generated a great discussion.
Lisa, who was diagnosed with breast cancer at a young age only 18 months after a clean baseline mammogram, had some great advice: Any doctor should be able to give an answer to the question, "Why are you ordering this test, and why now?" If not, I'd press for better explanation for the timing. When told "that's just what we do," I'd definitely press that. "Why do you do what you do if research on screening's effectiveness contradicts your practice?"
For now, I'm going to hold off. I have a few more years before I decide whether to start routine screenings at 40 or 50--and I have a feeling that will be a much harder decision.
What do you think? Did you get a baseline mammogram?
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BY KATHY LATOUR | MARCH 7, 2012
Getting breast cancer at 37 was pretty terrible. I had a 1-year-old daughter who was the light of my life, and I guarantee that if you talk to any mother who is diagnosed with breast cancer, it's all about the children.
At first it was about me living long enough to raise her. I wanted her to be old enough to remember me. Then five years after I was diagnosed, my 72-year-old mother was diagnosed with a really nasty breast cancer.
At about that time, we started to hear about a breast cancer gene. I don't know when the reality hit me that my cancer might be genetic, but when I added 2 and 2 and came to the very frightening conclusion that, if I did have a gene, I could have passed it on to my daughter, I got very angry. Not my daughter.
When another gene was identified it was still too soon for me to consider being tested. She was only 7, and there was little I could do at that point. Then when she was a teenager, my brother was diagnosed with prostate cancer at 48. Then at 57, I was diagnosed with a second breast cancer in the other breast. It was time.
I tested negative, but the report said I was in a familial cluster or something like that. I asked my genetic counselor what it meant, and she said that there was something going on, they just didn't know what it was, and I would need to be alert for new tests and other ways to look at genetics.
Great news. As I lived my life after that, I kept up with what was going on and my daughter kept getting older. She graduated from college, got a job (hooray!) and had health insurance. On her first visit to the gynecologist, she filled out all the paperwork and the doctor had barely said hello before asking if I had been tested for the gene.
When she called me asking if I had been tested, I told her yes and that I was negative. Now it was up to her doctor to say what I hoped she would -- and she did. She would have to be her own advocate and keep abreast of information about genetics for her own health as well as getting mammograms early and do breast self-exam monthly starting now.
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BY SUZANNE LINDLEY | MARCH 2, 2012
I had the luxury of spending Oscar week in a flurry of activity and pre-Academy Awards events. Debbie Durkin's ECO Oscar gifting lounge was my first stop. YES hosted an exhibit and was able to deLIVER Hope to celebrities and guests who attended.
We talked about liver tumors and the information, resources and support that YES! Beat Liver Tumors offers and the fact that it is possible to live with, and not die from cancer. Cancer touches everyone and at each event I have been humbled, inspired and sometimes saddened by the myriad of cancer stories that are shared.
I was also able to shadow Pam Schmid at the prestigious Multicultural Motion Picture Awards luncheon. Pam and I became close friends several years ago at a LIVESTRONG Summit and I have been fortunate to live vicariously through some of her accomplishments. This was one.
We arrived at the beautiful Sofitel Hotel in Beverly Hills and proceeded upstairs where we were ushered into a VIP line and then into the ballroom where the step and repeat and red carpet were being held. There were cameras and press three people deep. I felt claustrophobic while Pam was in her element. She was immediately surrounded for interviews and then whisked onto the red carpet, where she talked about her book and posed for the crowd of media.
Her book "101 Things You Should Know About Breast Cancer" has received high acclaim from experts, survivors and the lay public. It possesses a unique combination of facts and information that are woven together with story, bringing the information to life and giving direction to anyone who's life has been, or will be touched by cancer. You can find out more about her book or purchase a copy at PamSchmid.com.
Pam and I joined invited guests for the afternoon including 2012 Oscar Nominees Viola Davis & Octavia Spencer, Academy Award Winner Louis Gossett Jr., Academy Award Nominee Sally Kirkland, Actress Bai Ling, Producer Elaina Archer, Actress/Acting coach Bobbie Chance, Photographer/Filmmaker Kami Zargham McAdam and many 2012 Oscar Nominees and various celebrities that were on hand to support the young upcoming student filmmakers.
It was quite an honor to attend and heartwarming to see the impact that Pam made on all those present. No one could get enough of her story. She has met the challenge of metastatic breast cancer head on and given back each step of the way. Her journey with cancer and her desire to help others is nothing short of amazing. She inspires me to do more, to not give up and to make a difference. Thank you, Pam!!!
Next stop: Night of 100 Stars
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BY DEBU TRIPATHY | MARCH 2, 2012
There has been much news lately about new cancer drugs designed to be given in combination with older drugs – two for breast cancer that probably will be approved by the summer.
One of these is the HER2 antibody pertuzumab, which is given in combination with another HER2 antibody, Herceptin (trastuzumab). The other is the mTOR inhibitor Afinitor (everolimus) given with hormonal therapy.
The concept of specific therapeutic combinations makes biological sense because there are many intersecting biological pathways that drive cancer. However, our knowledge of these pathways and the specific proteins involved in them is very primitive at the moment, so we don't have a reliable way of finding the spectacular combinations (or secret formulas) that are considered synergistic – that is, where 2 + 2 = 100 in terms of effect.
This term is also known in scientific circles as "synthetic lethal," the sort of perfect storm, biologically speaking, where a specific combination of drugs disables cancer cells so effectively that none survive (or just a few in a trillion) so that a patient is effectively cured – or at least can live with advanced cancer with a normal quality and length of life.
The latest drugs that will be approved by breast cancer are not quite in this league, but certainly a step in the right direction. To finish the job, we need a combination of innovations in the laboratory and more information from the genetic abnormalities in human cancers. Specifically, systematic DNA and RNA sequencing and in-depth protein analyses of large numbers of cases tumors. It is hard to know if that alone will get us there, but it has become the new holy grail of cancer drugs.
Most cancers will probably require "cocktails" of drugs, very much like what it took to successfully treat (but not cure) AIDS. But the cocktail will need to be customized – much like a Chinese herbal formula, but in this case based on the molecular features of the individual cancer.
However, there is still a twist. This is termed "intratumoral heterogeneity," or differences between cells of a tumor that can lead to evolution over time, or selection of the fittest cells able to withstand cancer therapy. This is another challenge, but also an opportunity to learn how to develop better treatments. I will discuss this more in my next blog, so stay tuned.
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BY LINDSAY RAY | FEBRUARY 8, 2012
Dating can be a daunting task. When you first meet someone, there is the awkward dance of getting to know one another. Adding in a cancer diagnosis can make the footing even trickier. Figuring out when and how to disclose your cancer information is a question many patients and survivors struggle with, and there's no one-size-fits-all answer.
There's also a certain amount of fear for both the patient/survivor and the person he or she is dating. A recent commenter on the blog "Would You Date a Cancer Survivor?" wrote:
I'm trying to decide whether or not to date someone with cancer. [...]I am a caregiver for two aging parents, one who has alzheimer's and three progressive, fatal and untreatable medical conditions. We have no other family member living on this continent to help with my parents and I'm not up to taking on being a caregiver for and losing a boyfriend as well. I know little about cancer and survival rates or what someone with cancer goes through during treatment so I really have no idea of what I'd be getting myself into where I to continue dating him. Any thoughts or advice would be appreciated.
To help patients and survivors navigate the dating scene, the Young Survival Coalition and Bright Pink are hosting a teleconference about romance and the issues that surround it, such as self image, confidence and intimacy, tonight at 8 p.m. ET. The speakers leading the discussion will be Jean Rowe, LCSW, OSW-C, and breast cancer survivor Jamie Pleva.
To RSVP, email your full name to RSVP@BeBRightPink.org
To find out more information, visit: brightpink.org/event-020812-teleconference.
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BY ELIZABETH WHITTINGTON | FEBRUARY 6, 2012
Today, the breast cancer talk wasn't of Komen or Planned Parenthood or pink handguns.
Feb. 6 was the day that Rachel Moro and Susan Niebur, breast cancer survivors in every sense of the word, died.
Rachel had been living with metastatic breast cancer and blogged at The Cancer Culture Chronicles as @ccchronicles. Her profile statement is especially meaningful today: "It's time to move beyond pink ribbons and messages of "breast cancer awareness," and start agitating for real and meaningful action in the fight to eradicate this disease for good."
Susan had lived with inflammatory breast cancer, her fourth bout with cancer.
Both were prominent bloggers. Rachel's death was sudden. Susan had been sick for a while. Both chronicling their journey and supporting others in their online communities of women dealing with breast cancer, either as newly diagnosed, survivors or those living with metastases.
As I was reading reactions of others on Twitter about their deaths, a colleague noted that Susan had been interviewed for a story in the Spring issue--one that focused on how to help children cope with a parent's diagnosis. This was a perfect fit for Susan, who blogged under the name @WhyMommy at Toddler Planet: The joy of life after cancer. My hope is that the article will be just one more piece of a lasting legacy of helping others cope with this horrible disease.
Susan's family noted her passing on her blog today and wrote: "In lieu of flowers, please consider furthering Susan's legacy through a contribution to the Inflammatory Breast Cancer Research Foundation. Or please choose to make a difference somewhere, anywhere, to anyone."
Make a difference.
These women did. Unfortunately, sadly, there will be other women who will fill the void left by Rachel and Susan...women with cancer, or those who will be diagnosed, who will become a voice for others to draw strength and inspiration from. We need them. Just like we need Rachel and Susan.
Those wanting to remember Rachel and Susan tonight can join the #bcsm Twitter chat tonight at 9 pm ET/6 pm PT.
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BY KATHY LATOUR | FEBRUARY 3, 2012
First a recap. For the past four days we have been bombarded with information about the decision by Susan G. Komen for the Cure to remove funding from 18 Planned Parenthood sites, using the reasoning that they don't fund any organization under investigation. Well, within about 12hours it became clear that the decision came straight from the office of Karen Handel the new Komen Vice President of Policy and a former Georgia office holder and gubernatorial candidate who is anti-abortion and has even gone so far as to say she is anti-Planned Parenthood.
Now there is enough evidence to confirm that the decision to stop funding organizations under investigation was made in December specifically to stop funding Planned Parenthood, and again it was Handel that drove the decision. Komen has been down the Planned Parenthood path a number of times in the past decade and had made what everyone thought was a final decision–-it would be funded. But that was before someone recommended Karen Handel as the best person for the job of Vice President of Policy.
That person is known in the ranks of Komen as someone who mixes a particularly powerful batch of Kool-Aid that Nancy Brinker has become addicted to.
So where are we? Komen stands by its decision, but now Nancy Brinker goes on television to say it's a policy change to give money to direct service organizations, not pass through groups, which means they want to give the money to the groups that do the mammograms and Planned Parenthood evidently doesn't do that, they must send women out and then pay for it from Komen funds. So why the switch?
Personally, I think Nancy considered what their decision would mean for poor women in Dallas who go to Parkland Hospital, which, I am fairly sure gets Komen funds for its screening program and has been under investigation for two years – and found guilty, by the way, in areas that don't pertain to screening. And no one thought about this before? Komen is in a mess and this is where the broken hearts come in.
At the first headline, I blew it off. Komen has been a target before, a lot. They are big, they raise a lot of money, and the well over 100 affiliates raise money through the Race for the Cure, 75 percent of which is kept local for their own screening, education and treatment needs. This money reaches the very poorest of the poor and the women who work tirelessly for Komen affiliates make a real and tangible difference in the lives of these women. These are the salt of the earth of the American heartland where women are proud to take care of each other and dedicate thousands of hours a year to do just that.
Speaking around the country at Komen events, I have met hundreds of Komen volunteers and I would be proud to call any of them a friend. I have never asked anyone if she was a Democrat or Republican or if she was for or against abortion.
With the 25 percent the national foundation receives they fund numerous other projects including basic research, and as a 25-year and 7-year survivor, and a woman who lost her mother to breast cancer, I count on research to be sure my daughter doesn't have to face this disease, and if she does, she lives through it.
I have been president of the board of two nonprofits funded by Komen, one, the Bridge Network, provides direct support to women diagnosed with breast cancer who have no insurance. The other was Gilda's Club North Texas, now Cancer Support Community. These programs would have had a much harder time without Komen.
But what has really broken my heart this week is talking to the women who built the foundation, some of whom spent upwards of 20 years committed to this cause. The woman who created the policy office at Komen, a survivor herself, spent endless hours in the halls of Congress during her 10-year tenure, which ended in 2008. She worked both sides of the aisle to overcome any idea that Komen was politically driven. She also convinced the leaders of our country that this organization was about more than pink ribbons, it was about the power of the vote. She organized advocacy groups before we understood what advocacy was about. For 10 years she grew the office, only to watch the newest occupant, who has been with Komen nine months, bring it down in two days.
These were strong women who wouldn't take no for an answer, just the way Nancy Brinker wouldn't when she started the organization as a promise to her sister. There are some of the "old guard" left, women who took Komen to the heights in the nonprofit world to make it what it was on Monday of this week: An organization committed to ending breast cancer that was built on integrity and very decidedly non political – because breast cancer doesn't care what you believe, it is an equal opportunity killer. There is no place for politics at Komen.
There are many of us who fear that Komen will not be able to recover from this in part because of the way it has been handled. If I had been Karen Handel, I would have offered my resignation immediately, and I was hoping she would have the honor to do that. Then I saw the retweet she posted, "Just like pro-abortion group to turn cancer orgs decision into a political bomb to throw. Cry me a freaking river" and feared the worse. This woman has no grace, no courage and an ego that doesn't care if she brings down in nine months what it took others 30 years to build.
Resign Karen. You owe it to a lot of people.
1:27 p.m. Nancy Brinker has made a statement that includes the following
"We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligiblity to apply for future grants," Nancy G. Brinker, the agency's ambassador, said in a statement.
So Handel is still there and to shut down the firestorm, PP can apply. This does not mean they will be funded.
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BY DEBU TRIPATHY | DECEMBER 11, 2011
The final day of the San Antonio Breast Cancer Symposium began with an update from members of the working group of the Cancer Genome Atlas (TCGA) and International Genome Consortium (IGC) who are together embarking on a massive project to obtain broad scale gene sequencing, RNA profiles and functional protein information on breast tumors and to assemble a comprehensive database that can be immediately shared and "mined" to obtain important clues to the triggers of cancer and its vulnerabilities that can be exploited for therapy.
The efforts in the breast cancer component of this project will eventually involve over 1000 cases and a very large team of scientists, bioinformaticians and clinical consultants. The sheer amount of data generated (3 billion base pairs for each tumor genome just for starters) is mind-boggling. But special data analytical tools and high-powered computers are able to generate patterns – a glimpse of this was presented in a progress report on Sunday, revealing some new insights.
Most tumors contain several mutations, but only a few are commonly seen. The recurrent genetic abnormalities are presumed to be "drivers" – directly responsible for cancer behavior, while some are "passengers" – results of genetic instability and errors in DNA division and processing, but not affecting malignant potential. This is an important distinction, since drivers represent potential diagnostic markers and targets that are "druggable", and would only have been discovered through this extensive effort.
The numbers and types of mutation seen are distinct among the recognized classes of breast cancer based on hormonal and HER2 receptor status. Also, the consequences of these mutations on cell function appear to be similarly grouped. The expression of genes and their translation into protein, which are the actually workhorses of cellular structure and function, are not only affected by gene mutations but also by "epigenetic" alterations. These are not picked up by gene sequencing, but rather by detecting attachments to certain base pairs of DNA and the proteins that help organize DNA into a useful template that orchestrates when and where genes are expressed.
There is growing evidence that epigenetic changes may be the earliest events that set the stage for genetic mutations and modulation of the tissue microenvironment that help support cancer growth and spread. The field of epigenetic is rapidly growing and a few approved cancer drugs work through these mechanisms. At Sunday's session, a clearer map of epigenetic changes in the context of cancer subtypes began to emerge and this will undoubtedly provide a roadmap to better classification systems and treatment strategies.
What was special about this session is the power of collaboration and large numbers. The tiny pixels are starting to come together to provide a landscape – and we all hope this will be transformative.
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BY DEBU TRIPATHY | DECEMBER 10, 2011
Dr. Debu Tripathy discusses how a test, a variation of the Oncotype DX test, could help physicians decide on radiation therapy for their patients diagnosed with ductal carcinoma in situ (DCIS).
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