A4BC at SABCS 2015

We are pleased to announce the success of our newly implemented scholarship program. We awarded two amazing women, Jennie Grimes and Grazia De Michele paid scholarships thanks to our generous donors at Advocates for Breast Cancer (A4BC).

Jennie Grimes, Susan Zager and Grazia De Michelle

Grazia De Michelle – an Italian born woman currently living in the UK.was diagnosed with breast cancer in 2010, at the age of 30, and has been a patient advocate ever since. She was treated in Italy where, unlike the United States, breast cancer advocacy is still in its infancy and the level of patients’ engagement with researchers and healthcare providers is low. As a result, at the end of active treatment, in 2012,  Grazia started  her blog, Le Amazzoni Furiose (The Furious Amazons), to promote Italian women’s involvement in the international debate on breast cancer. A year later, she joined the Breast Cancer Consortium, a network of scholars and advocates interested in breast cancer, critical health-literacy and evidence-base medicine founded by medical sociologist Gayle Sulik.

Jennie Grimes – a metastatic breast cancer (MBC) patient is literally dying for a cure. She is 35 years old, going through a rough time because there are limited choices of drugs to keep her alive. She asked the professionals at #SABCS15, “please keep me alive.” My heart is breaking because I wish there was more available for her and so many others dying of stage IV breast cancer.
The most exciting part of the symposium was (A4BC) joining with other organizations that are working toward the same mission.  We met with Beth Caldwell, mother, wife, cancer patient, METUP co-founder, and blogger. Meeting people that we know through social media and being able to interact with them is so meaningful because we are able to join forces to save lives. We also met Corrie Painter PHD who along with NiKhil Wagle, MD is working on the MBCProject.org. They believe in sharing the data. This is a whole new way of approaching research.

 Learn More at: http://www.MBCProject.org

The truth is that when it comes to breast cancer, we are in an epidemic. Over 40,000 women and 400 men die each year in the U.S. alone from Metastatic Breast Cancer. This is the same number of deaths in the U.S. that occurred during the height of the AIDS epidemic. So while many breast cancer organizations use pink marketing to raise money for a cure, the reality is they just keep saturating the public with the idea that breast cancer is a pretty pink disease with survivors.

People mean well. But they don’t understand that living with MBC has nothing to do with whether the person “fights hard enough.”

Many people did not understand why we are demanding that Stage IV needs more focus; too many women (and some men) are dying. What we’ve done in 25 years has not had much impact on the death rates. We must prioritize our efforts to save lives.

If we could finally understand why someone gets breast cancer, like we understand how AIDS is spread, it would be a huge help towards finding life saving treatments and prevention.

If you want to be part of the work we are doing at Advocates for Breast Cancer, please consider giving a tax free donation. We have a new donation page on our site. We are so grateful to our donors and supporters. Wishing you peace, health, love and happy holidays! 💝💖💝💖

 

Metastatic Breast Cancer Awareness Day – Every Day and every October 13

We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Especially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

Almost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

“METavivor on the Move” – I am on the team

I have written about my passion (see: While Flying – Frustration surrounds Me ) for doing  everything I can to advocate for Metastatic Breast Cancer (MBC). 6-10% of breast cancer patients are initially diagnosed at Stage IV (MBC). 30% of all breast cancer patients initially diagnosed with early stage breast cancer will eventually metastasize (or have what some of us call mets). 

In the US alone 1 woman dies every 14 minutes of MBC. I have many friends now who have MBC. Metavivor is an organization that I have great respect for. Like Advocates 4 Breast Cancer they are an all-volunteer, patient-founded organization. They are devoted to raising awareness about metastatic breast cancer, funding vital MBC research and they promote the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research.

Right now only 2% of all funds for breast cancer organizations go to MBC research. This has to change. As the Executive Director of Advocates 4 Breast Cancer (A4BC), I am proud that our organization is listening to Metavivor. We are devoting 30% of our funds each year to MBC research. We hope that other non-profits will follow our example and recognize how important it is for all breast cancer organizations to fund MBC.

As an update to A4BC, we are in the process of getting our official site up and we are working around the clock to have it done. We are now on Facebook.  Thank you everyone for liking the page and if you haven’t seen it, please have a look and “like” the page to stay updated. Please click on: https://www.facebook.com/advocates4breastcancer.

I am haunted by the death of my very good friend Li Bailey, and my other friends who have died from MBC. Unfortunately this list keeps growing. I also hate that many of my friends have recently become part of the 30% joining my other friends who have MBC. This disease robs so many of so much. We must have MBC research that continues to bring about “quality of life” medications that will extend everyone’s lives for years (not just weeks or months). Forty thousand women in the US alone will die from MBC this year.

Metavivor is also looking for volunteers. They have a fantastic campaign called “Metavivor on the Move.”, inviting people to join the volunteer team. They are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada. Although I have a very full plate, I am part of the volunteer team doing what I can to help with Metavivor.  If you would like to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

To learn more about MBC please check out Nancy’s Point at: http://nancyspoint.com/mets/

To learn more about METAvivor, please visit their website here: www.metavivor.org.

 

The Angelina factor

Here is a great post from my friend Tami who has MBC (Metastatic Breast Cancer). What I love most about Tami is while she knows the realities of this disease, she continues to inspire as she shares stories about hope on her blog as well as her award-winning book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds.

I was also sorry to hear about Angelina’s Aunt who died from MBC. Because there are 113 deaths a day from MBC in the US alone, you can also read an incredible Tribute to Maria Wetzel who also died from MBC the same day as Angelina Jolie’s aunt.

We must do everything to continue research that will help those with metastasis stay alive, while we work on ending this terrible disease.

The Pink Fund

Now that some time has passed, I think I can discuss this in a rational manner. There have been varied reactions to Angelina Jolie’s descision to have a double mastectomy after testing positive for the BRCA gene mutation, a hereditary factor affecting a five percent of breast cancer and 10-15 percent of ovarian cancer cases. The cover of People magazine calls it a brave and heroic act. Others call it self-serving and drastic. I just read an article in the Boston Globe, which criticized her for having the wealth and beauty to afford such an endeavor.

My reaction? Sheer anger and frustration. I bristled at all the attention and admiration bestowed upon Angelina, when in contrast I feel the real heroes are the women facing metastatic (stage IV) cancer who  garner little publicity, and worse, funding. I felt furious that so many wonderful women and men, many of them young…

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Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

I have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying the famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

Outlaw Human Gene Patents – Why this Supreme Court Case is so Important to Us

Monday, April 15, while most people are thinking of their deadline to have their taxes in, the Supreme Court will be hearing oral arguments in a landmark case where Myriad Genetics, a corporate diagnostic testing company, is being challenged on their attempt to have a patent on the “breast cancer genes” BRCA1 and BRCA2.

One of the plaintiffs in the case is Breast Cancer Action, an organization that I am proud member of the Speaker’s Bureau. Breast Cancer Action invited people to join them in a rally on the steps of the Supreme Court to outlaw human gene patents.

According to Breast Cancer Action, myself and so many other people, “Human genes are for human beings, not corporations. Corporate ownership of our genes harms women’s health and blocks progress on breast cancer. This is a historic case that has wound through the legal system for four years.”  I wish I could be on the steps of the Supreme Court with Breast Cancer Action in DC, but I am going to be with them in spirit. Meanwhile I am going to print many stories I  find about this case on my Facebook page, Twitter , and articles I scoop on Breast Cancer News.

The only national breast cancer organization to join the lawsuit against Myriad Genetics’s patents is Breast Cancer Action and I think it is so great that they don’t take money from companies that profit from or contribute to the breast cancer epidemic. This case has united many women’s health organizations, genetic counselors, breast cancer organizations, doctors, research organizations, breast cancer patients, and patient advocates.

The lead plaintiffs in the case are the American Civil Liberties Union and the Public Patent Foundation. The Center for Genetics and Society has also signed several briefs. One of the briefs makes the important point that, “U.S. case law and patent statute plainly say that patents can be awarded only for human inventions.”  I think it’s obvious that genes are not a human invention just like the moon is not a human invention. When we make a space craft to go to the moon that’s a human invention.

These genes are in all of our bodies, but if certain mutations of the BRCA1 and BRCA2 genes are present it will raise the risk of someone getting breast and ovarian cancer. This is important information for people to know if they have these variants. These genetic mutations affect choices if there is an increased need of tests for cancer screenings. It also can contribute to someone’s decision if medical professionals suggest that organs  be removed in their cases.

The test can cost over $3000.00 in some cases, and by Myriad having a monopoly, they are the only ones that can do the test. Many low income people can not afford the test and many of them are at high risk for these dangerous mutations. This prevents someone from getting a second opinion and sometimes people are told they may carry some of these mutations but Myriad is not sure if these are the variants that add to their increased breast cancer risk.

Myriad’s patent controls all the versions of the BRCA1 and BRCA2 genes and this also prevents other companies from researching other variants and mutations that are important genomic information for those at risk and actively in treatment for breast cancer. This additional research would contribute important information to help doctors and patients determine more treatment options.

This test is important to metastatic breast cancer patients that are “triple negative” and when they are dying from the disease this test can help give information when deciding if a Parp inhibitor will help them extend their lives for a longer period of time. In the United States, about 108 women die a day from breast cancer. That’s one woman every 14 minutes.

We are hoping that the Supreme Court goes against Myriad and makes the right decision that doesn’t allow Myriad to have this patent. This case will set an important precedent on the future of patents for all the genes that we are trying to uncover in relation to cancer as well as many other diseases.

I am angry because Myriad has plenty of money to hire expensive patent attorneys and it’s obvious they care more about their profits than human lives. I hope the Supreme Court recognizes that this would be a terrible precedent allowing a big diagnostic testing company to have a patent on our human genes.

In a recent related forbes.com article that I scooped called Data War Reaches The Supreme Court, it brings up even more excellent points why there is so much at stake for all of us with the upcoming case in the Supreme Court. The forbes.com article took a quote from a New Yorker article that sums this whole problem up just perfectly. I could not have said it better myself:

 “Just as we enter the era of personalized medicine, we are ironically living in the most restrictive age of genomics. You have to ask, how is it possible that my doctor cannot look at my DNA without being concerned about patent infringement?”

“If these patents are enforced, our genomic liberty is lost.”

(Christopher E. Mason, of Weill Cornell Medical College and Jeffrey Rosenfeld, an assistant professor of medicine at the University of Medicine & Dentistry of New Jersey)

It is interesting to note that once again with a different set of circumstances, the future of our personal healthcare is again in the hands of the Supreme Court. Because Myriad is trying to patent our own genes, this case has far reaching impact on cancer as well as our rights as patients for many other diseases. The wrong decision could lead to terrible consequences. Let’s hope the Supreme Court gets this one right.

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There are some great articles below that I gathered information from. They also give more insight in to this important case.

1. bcation.org – Outlaw Human Gene Patents

2. forbes.com – Data War Reaches The Supreme Court

3. latimes.com. –  Who should own DNA? All of us

4. nancy’spoint.com – BRCA1 & 2 Gene Patents, A Landmark Case & A Rally at the Supreme Court

Valerie Harper Inspires

I am so touched by Valerie Harper. As I am sure my readers are aware , not only is Valerie an incredibly accomplished actress, but her warmth and grace has been so touching during this terrible diagnosis of leptomeningeal carcinomatosis, a rare condition that happens when cancer cells invade into the fluid-filled membrane that surrounds the brain. She has been told by her doctors she will likely be able to survive about three months.

I had the good fortune to meet Valerie at a hair salon that I used to go to. She was always down to earth and always friendly while at the salon to others. When I thought her appointment was ahead of mine she told me it was not and that I was to take my turn.

She has bravely gone on television, visiting The Today Show, The Doctors, The Talk, Good Morning America , and spoken with People Magazine. Each interview had her glowing with life accepting her diagnosis when you know she is in shock. It is so wonderful to see such a loving relationship with her husband.

She is also a lung cancer survivor. She never smoked. So many lung cancer survivor’s never  smoked or quit a very long time before their diagnosis. I think that lung cancer is the cruelest of all cancers because so many people assume it’s only from smoking and I know many people who have had or are living with lung cancer and they are all non smokers. It’s a disease that deserves no blame. There is a campaign around lung cancer where we attach the words, “no stigma”. Meanwhile Valerie caught the lung cancer early and survived it.

Now she faces such a difficult diagnosis. We see her looking healthy and beautiful and as so many with metastatic cancer do. People are surprised because they not look as though they are very ill especially at the beginning of their diagnosis. Different cancers at different metastatic stages are like that and each one has a different set of statistics for how much time a patient has a chance of living. With my close friend Li when she was metastatic we often talked about living through the dying and making the most of the time we have. Like Valerie we wanted quality of life, not quantity.

There is a wonderful article by Donna Kaufman in I Village that talks about the 10 most inspiring things we’ve learned from Valerie Harper that I am going to copy and paste here. Valerie’s courage and willingness to share this private part of her life with all of us teaching us so much is just beautiful.

The 10 Most Inspiring Things We’ve Learned from Valerie Harper

1. Don’t blame yourself for tragedy. “If you die, you’re not a failure,” Harper said on Today. ‘You’re just somebody who had cancer. And that’s the outcome.”

2. Live in this moment, right now. “I’m not dying until I do,” Harper told Today. “I have an intention to live each moment fully.”

3. Remember that death is part of life. “I really want Americans, all of us, to be less afraid of death,” Harper said on The Doctors. “Know that it’s a passage, but don’t go to the funeral before the funeral. While you’re living, live.”

4. Let yourself be sad — but stay hopeful. “I don’t mean this to be Pollyanna! I allow myself the grief,” Harper told Today‘s Savannah Guthrie, when asked if she ever felt sad. “What I’m saying is keep your consciousness, your thoughts open to infinite possibility and keep yourself open to miracles.”

5. Don’t give in to despair when there’s more pasta to eat. When Harper first heard her diagnosis, she said on The Doctors, “I broke down. I absolutely sobbed. I let myself do it. Then I said, ‘Okay, you’ve been the drama queen. Now get over it and make the pasta.'”

6. Deal with your battles in the way that makes sense to you. When one of the Doctors asked Harper why she was spending her final days on a press tour, she responded, “Dr. Travis, this is not for everyone. This is my way of dealing with it.”

7. Don’t live in denial. “I’m trouble,” Harper admitted in a video message for People, “but when the smoke clears, I’ll be standing. Until I’m not. And I’m ready for that, too.”

8. Don’t forget to live just because you’re dying. “‘Incurable’ is a tough word. A lot of people were calling — ‘Can I come by the house?’ ‘Are you in a wheel chair?’ — because they hear it as this death sentence,” Harper said on Today. “Which it may be. But I’m not dying until I do. I promise I won’t.”

9. Never be afraid of what’s next. “I don’t know what’s ahead, but I’m ready for it. Onward!” Harper told fans in her People message. “I love you. And know that I’m okay. I am okay on this venture.”

10. Keep your loved ones close. Harper says she’ll be spending her last months with her husband and daughter while she undergoes treatments to try to slow the progress of her disease. “My doctor said it’s incurable — so far,” Harper said on GMA. “And I love that possibility. We all need to live in infinite possibility.”

Valerie speaks of how important it is not to blames oneself for a cancer diagnosis. She talks about living in the moment and not focusing on the dying. She says to deal with your battles in your way. For her it was going on Television and speaking to her fans. Most important she speaks of keeping family close. Even though she knows that her disease is “incurable”, she still lives in a world of “infinite possibility.”

Her message is one of so much hope for so many that have faced incredible obstacles in their lives. I just love everything about Valerie!

Survival – A Widow’s Journal

In Survival, A Widow’s Journal, Muriel Kagan Zager describes her experiences following the loss of her husband, Victor, after 56 years of marriage. Her reactions to her new status and the unexpected reactions of others to her situation provide an insight into what new realities she faced.  She discovered that some people she thought would be there for her were not; and some she little knew became life-lines for her.

Psychologists and therapists in the field have praised the work; many feeling that it should be used as a text for students learning about mourning. Widows and others going through the loss of a loved one have been helped through Muriel Kagan Zager’s journey.

I am so proud of my mother who wrote Survival, A Widow’s Journal. She is a journalist who specializes as a correspondent in the Middle East and an accomplished author. She has published four novels and she just published her fifth book call Survival – A Widow’s Journal. The book is based on a true story about my father who died of pancreatic cancer on June 6, 2008. I think that anyone who has lost a loved one to cancer or any other reason will really be helped by her book. Many of you will also will enjoy reading it because  she tells her story with wonderful grace. She’s a fantastic writer.

My mom let my sister and I read it before it was published and I also have read different parts of it again throughout this week. The book just came out a week ago. I want to tell you a little about my father, Victor, and his experience with cancer. He had kidney cancer aka renal cell cancer 15 years before he died of pancreatic cancer. The kidney cancer was caught early enough and they were able to take the damaged kidney from the cancer out surgically, and he required no further treatment besides the usual follow ups.

In early 2008 he was more tired than usual and his regular MD thought he had sinus infections and kept giving him antibiotics. He traveled with my mom for business and pleasure all over the world. Ten days before his diagnosis he felt horrible and his stomach got very bloated. He spent Memorial Day weekend at home in terrible pain and would not let my mom take him to the hospital. He didn’t want to bother his MD.

Finally when the holiday was over he had an MRI and it was discovered that he had metastatic cancer all over his body. If you read my mom’s book there is much more detail about what happened. We managed to get him on a medical plane to Nashville where most of the family including his grandchildren were able to see him at the hospital the last five days of his life. We later determined that he had pancreatic cancer.

I was happy that my dad lived out his last six months not knowing how sick he was and able to just enjoy his life. We had wonderful moments during his life as well as while he was in the hospital.

My father was an amazing man.  I am so grateful for the time I had with him and I am so lucky that I have grown up with such special parents and siblings, and my mom continues to bring me joy every day!

I urge all of you to check out my moms book. Below is a great review written by someone very special to my mom and me.

“What does it take to face the death of your husband of 50 years?  Can you be strong enough to survive and re-enter the world?  Muriel Kagan Zager has written the most honest and passionate love story in “SURVIVAL, A Widow’s Journal.”  As you hear the pulse of Muriel’s heart in every honest sentence, you will also feel the agony, the loneliness and the finality of the death of Victor, her spouse.  There is no smoothing over the misery, the heartbreak and the predestination of “who will live and who will die,” and when.  There are many books written about the wonder of life, but this is a passionate story about love, loneliness and survival.  “SURVIVAL” is worth reading for anyone who has faced a future of uncertainty.”

To Order the book and peak inside click here to go to amazon.com.

An Incredibly Moving Video – The Light that Shines

Here is a wonderfully moving video that speaks for itself. Go to: http://www.youcantbeserious.com.au/blog/the-light-that-shines/ and click on the video. Enjoy!

San Antonio Breast Cancer Symposium (SABCS)

Below is information taken from the San Antonio Breast Cancer Symposium (SABCS) web site explaining what the symposium is all about. Although I was unable to attend this year, I have attended in 2009 and 2010 and it is a very exciting fast paced meeting with incredible presentations of abstracts and clinical trials that are all about breast cancer.

In the evening the Alamo Breast Cancer Foundation had wonderful medical professional speakers that have many patient advocates as well as advocates who receive a scholarship in attendance to go over the presentations that went on during the day. Some of my fellow bloggers and friends including AnneMarie (Chemobrain….In the Fog With BC from 2 AD), Lori (regrounding),(CJ (metavivor.org), Gayle (pinkribbonblues.org), Jody  (women with cancer), and many more attended and they have blogged and tweeted about the conference.

I have followed the conference and put articles in my daily breast cancer newspaper at http://www.scoop.it/t/breast-cancer-news. I have picked a great source called Onc Live that has a great review of the presentations in articles that if you missed the conference or just wanted to know about it, here is an excellent place to read articles of presentations in San Antonio.

I had hoped this year would bring more research for Metastatic Breast Cancer (MBC) and as a patient advocate I am discouraged because there wasn’t much news on MBC, except progress with those that are HER-2 positive. As a patient advocate I think that all of us need to use our voices to get funding for more research when it comes to MBC.

About SABCS

Meeting Profile For thirty-five years, the symposium’s mission has been to provide state-of-the-art information on breast cancer research.  From a one-day regional conference, the symposium has grown to a five-day program attended by a broad international audience of academic and private researchers and physicians from over 100 countries. The symposium aims to achieve a balance of clinical, translational, and basic research, providing a forum for interaction, communication, and education for a broad spectrum of researchers, health professionals, and those with a special interest in breast cancer. In 2007, the Cancer Therapy & Research Center (CTRC) at UT Health Science Center San Antonio and the American Association for Cancer Research (AACR) announced a collaboration for the future of the San Antonio Breast Cancer Symposium.  The symposium has been renamed the CTRC-AACR San Antonio Breast Cancer Symposium.  Complementing the clinical strengths of the highly regarded annual San Antonio Breast Cancer Symposium, the AACR’s scientific prestige in basic, translational and clinical cancer research will create a unique and comprehensive scientific meeting that will advance breast cancer research for the benefit of patients. In 2005, Baylor College of Medicine became a joint sponsor of the symposium and will remain in the CTRC-AACR collaboration. C. Kent Osborne, MD, Professor of Medicine and Molecular and Cellular Biology, Director, Dan L. Duncan Cancer Center, Director, Breast Center, Baylor College of Medicine, Peter M. Ravdin, MD, PhD, Ruth McLean Bowman Bowers Chair for Breast Cancer Research & Treatment, Director of the Breast Cancer Program, UT Health Science Center San Antonio and Carlos L. Arteaga, MD, Director, Breast Cancer Program Vanderbilt-Ingram Cancer Center, Vanderbilt University are Co-Directors of the symposium.

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Oncology Conference Articles

Cognitive Impairment Previously Linked to Chemotherapy May Originate Before Treatment

The mental toll and stress of a breast cancer diagnosis might factor into the cognitive impairment experienced during chemotherapy treatment, commonly referred to as “chemo brain.”

Long-Term Data Confirms One-Year of Adjuvant Trastuzumab as Standard of Care

Eight-year follow-up data from the phase III HERA trial has confirmed that 1-year of adjuvant trastuzumab should remain the treatment standard in women with HER2-positive early-stage breast cancer.

Adjuvant Bevacizumab Falls Short in Triple-Negative Breast Cancer

Patients with triple-negative breast cancer had no statistically significant improvement in disease-free survival when they received adjuvant treatment with chemotherapy plus 1 year of bevacizumab.

Study Shows Eribulin Not Superior to Capecitabine in Previously Treated Metastatic Breast Cancer

Eribulin mesylate failed to show a statistically significant survival benefit compared with capecitabine in women with previously treated metastatic breast cancer.

Long-Term Follow-Up Supports Use of Hypofractionated Radiotherapy in Early-Stage Breast Cancer

Long-term follow-up results showed that the hypofractionated regimens were as effective as the 50-Gy standard in women with early-stage breast cancer.

Genetic Analysis Identifies New Targets in Triple-Negative Breast Cancer

Patients with triple-negative breast cancer who have residual disease after receiving neoadjuvant chemotherapy have a series of genetic alterations that are clinically targetable and may warrant further study.

HDAC Inhibition Appears to Sensitize Triple-Negative Breast Cancer Cells to Certain Treatments

Preliminary research suggests that in-vitro exposure to an HDAC inhibitor may sensitize triple-negative breast cancer cells to treatment with a PARP inhibitor and cisplatin.

Adjuvant Chemotherapy Improves Survival in Women With Recurrent Breast Cancer

Adjuvant chemotherapy improved survival rates in women with isolated local or regional breast cancer recurrence, according to results from the CALOR trial.

Higher Dose of Fulvestrant Associated With Improved Survival in Advanced Breast Cancer

Postmenopausal women with advanced estrogen receptor–positive breast cancer lived longer when they received a 500-mg dose of fulvestrant as compared with a 250-mg dose.

New Agent Significantly Improves Progression-Free Survival in Patients With Advanced ER+ Breast Cancer

Combining the investigational PD 0332991 with letrozole as first-line therapy extended progression-free survival in women with advanced estrogen-receptor positive breast cancer.

Sentinel Lymph Node Surgery After Chemotherapy Shows Accuracy in Nodal Staging in Breast Cancer

Sentinel lymph node surgery may provide a less-invasive alternative to axillary lymph node dissection for nodal staging in node-positive breast cancer.

Adjuvant Tamoxifen for 10 Years Better Than 5 Years in ER-Positive Breast Cancer

Extending the duration of adjuvant tamoxifen treatment to 10 years was more effective than the standard 5 years of treatment in protecting against recurrence and death among women with ER+ breast cancer.

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