But Tony Martell Knew Me: Guest Blog Post

Bob Brown is an inspirational speaker and the author of “The Ride Of My Life”, the widely acclaimed memoir of his journey with pancreatic cancer.

Being diagnosed with cancer is a devastating and lonely moment.  No matter how sizable your support team, or who is in the room with you at the time, when the Doctor says “You have stage 3 inoperable pancreatic cancer,” you alone are forced to absorb that most difficult news.  My wife Linda was with me that fateful day in March 2008, and considering the immediate and overwhelming fog that overtook my brain, I was lucky to have her to physically compose and escort me back to our home.  During that ride in the car, my mind searched for the beginnings of a plan.  I knew that we would need to do a lot of research, reach out to a bucket load of doctors, and look for support wherever we could find it.  As I sat in the car watching the road go by, I had no idea who Tony Martell was….but he knew me.

The doctors explained that my treatment options were few, the success rate even less and that the short term prognosis was very grim.  They wouldn’t even discuss the long term anything.  They created a plan to try and shrink the tumor before it spread.  They hoped to get me to an operable status so that the toxic villain could be cut from my body.  The treatments called for chemotherapy, to be followed up with radiation supplemented with additional chemo.  I was determined and my spirits were high.  Those of my doctors were anything but.  Clearly this was going to be a long shot, against the cancer with the lowest survival rate.  Looking forward even a little bit meant I was moving into miracle territory.  I didn’t know a whole lot about miracles….but Tony Martell had seen quite a few of them.

I began the treatments with a fierce positive attitude, determined that I would beat the odds.  I prepared for the side effects which I was told would be bad.  That wasn’t entirely true, as they were actually much worse.  As the treatments extended into weeks and then months, I was rendered pretty much useless.  I made it to the treatments, but spent the remainder of time in bed totally exhausted.  Tony Martell spent those months just as he had most of the past 30+ years, tirelessly leading an organization dedicated to raising funds and supporting research to rid the world of leukemia, AIDS, and all types of cancer.

Well the treatments didn’t work.  The tumor shrunk only a little bit, and my oncologist and surgeon delivered the bleak news: “There’s nothing more we can do for you.”  My wife and I could not accept that, and we searched far and wide for other opinions.  We found a surgeon at Columbia/New York Presbyterian Hospital who saw my case differently and was willing to expand the boundaries of what was normally attempted.  If I was willing to accept the elevated risks of this surgery, then yes, he was willing to try.  I agreed, and he performed a fourteen hour “whipple” surgery that saved my life.  Today, five years after diagnosis, I am one of the few…a long term survivor of pancreatic cancer.

It shouldn’t come as a surprise that Columbia/NYP is one of the hospitals receiving funding from the T.J. Martell Foundation to advance innovative research and treatments.     Nor should it come as a surprise that I was helped by a foundation with which I had had no previous contact.  For as a cancer patient in need of the best innovative care, The T.J. Martell Foundation knew me.

When I was asked to speak at the Annual Gala in New York last year, it was my opportunity to give back to Mr. Martell and show my gratitude for everything he does.  I approached him, stuck out my hand and introduced myself.  He looked at me with a big smile and said “Hi Bob Brown, I know all about your story; you’re one of the luckiest guys in the world.  You beat pancreatic cancer.”

Like I said, I didn’t know Tony Martell, but he sure knew me.

Bob Brown is an inspirational speaker and the author of “The Ride Of My Life”, the widely acclaimed memoir of his journey with pancreatic cancer.

Guest Blog Post Follow-Up – A Story of Hope

Hi Everyone!

My name is Cameron, and some of you may remember seeing my guest post a while back about my time as a caregiver to my wife, Heather.  She was diagnosed with a very rare and deadly cancer called mesothelioma 7 years ago, less than four months after giving birth to our daughter. Despite the usually bleak odds that come with a mesothelioma diagnosis, she was able to fight back and eventually defeat this terrible disease. Today, she remains healthy and cancer free.  We now both work hard to raise awareness about mesothelioma, and also to provide hope and support to all those currently fighting cancer today.  We recently participated in this short video about our story, and I hope you’ll take a few minutes to watch it and share it with someone facing a difficult struggle of their own.  With hope, the odds don’t matter!

A World Without Cancer – Guest Post

Dr. Margaret Cuomo is the author of “A World Without Cancer: The Making of a New Cure and the Real Promise of Prevention;” she is a board-certified radiologist who served as an attending physician in diagnostic radiology at North Shore University Hospital in Manhasset, N.Y. for many years. She was the keynote speaker at the T.J. Martell Foundation’s inaugural Women of Influence Awards at Riverpark in New York City.

We are honored to share her perspective here on Angelina Jolie’s courageous decision regarding the discovery of her BRCA1 genetic mutation and subsequent bilateral (aka “double”) mastectomy, as well as the implications for the cancer community.

Dr. Margaret Cuomo is the author of “A World Without Cancer: The Making of a New Cure and the Real Promise of Prevention.”

Angelina Jolie has my admiration for her courage in publicly describing her decision to undergo a bilateral (aka “double”) mastectomy. Her BRCA1 genetic mutation significantly increases her risk of developing breast cancer and ovarian cancer.

According to Jolie’s New York Times op-ed piece, her doctors estimated that she has an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. Women who have inherited BRCA1 and BRCA2 mutations account for 5 to 10 percent of breast cancers and 10 to 15 percent of ovarian cancers (for white women) in the United States, according to the National Cancer Institute.

Knowing that her own mother died at the age of 56 following her battle with cancer, Angelina Jolie, the mother of six children, decided to be pro-active, and decided to sharply reduce her risk of breast cancer by undergoing the mastectomy.

The question that I hope many women are asking is: “Is this the best that we can do in the 21st century?” After 41 years and more than 90 billion dollars spent since the War on Cancer was declared, we should expect more effective and less invasive solutions to reducing breast cancer, and all cancers.

Are the National Cancer Institute and the pharmaceutical industry committing enough of their intellectual and financial resources to the discovery of safe, new ways of detecting breast cancer and ovarian cancer in their earliest stages?  If a patient has a BRCA1 or BRACA2 mutation, are there techniques available to “turn-off” the faulty genes?

Is there a sense of urgency about finding new tests to detect breast cancer and ovarian cancer, and other cancers, that do not involve radiation – a known carcinogen?

The prevention of cancer should be our ultimate goal and it should have the full benefit of the National Cancer Institute’s and industry’s vast resources.

Our children are our future, and we should expect that their generation will prevent cancer without the traumatic solution that Angelina Jolie felt obliged to accept.

Guest Blog Post: The Fight Of Our Lives

My Wife’s Battle Against Cancer
by Cameron Von St. James 

My wife, Heather received her diagnosis of malignant pleural mesothelioma in November of 2005. It was the beginning of what would be the hardest challenge either of us would ever face. Just three months before, my wife and I had been on top of the world, celebrating the birth of our first and only child, Lily. We had expected to spend the next month excitedly preparing for Lily’s first holiday season, but life had other plans.  In an instant, our focus shifted to fighting cancer.

After giving us the diagnosis, the doctor made several recommendations for treatment.  We could visit a local hospital, a very good regional hospital that unfortunately lacked a mesothelioma program, or a specialist in Boston that dealt frequently in the treatment of Heather’s cancer.  I waited for Heather to express interest in any of the options, but it was clear to me that she was still paralyzed with shock and fear, and needed help.  I turned to the doctor and said, “Get us to Boston!”

For two months after her initial diagnosis, life seemed to spiral out of control. Between taking care of Heather, caring for Lily, scheduling trips to Boston, taking care of housework, and working full-time, my life was overwhelming to the point of tears sometimes. There were times when I just wanted to crawl in bed and never move again. I just felt a sense of unfairness for a new mother to be going through this. What should have been the happiest time of our lives was turned into a nightmare of painful cancer treatments and medical bills that were through the roof. I feared losing Heather and having to raise Lily alone and broke.  Despite having these fears in my head, I never let Heather see them.  I knew she needed me to be strong for her.

In time, I gradually grew into my new roles and learned to deal with them better. I learned to let go of my pride and ask for help when I needed it.  Our family and friends came through time and time again and helped lift the weight from my shoulders.  I learned to allow myself to have bad days, those are inevitable and sometimes even necessary, but through it all I never allowed myself to give up hope that we would make it through this. Heather underwent intense treatment including surgery, chemotherapy and radiation over the following months.  It was tough on our family, but we were able to pull together and fight through it.

This ending is a happy one. Despite the frightening odds against her, Heather beat mesothelioma and is now cancer free, and we’re raising Lily together, having learned so much during our experience. We’re stronger for it.

I credit my stubbornness with having lived through this and become a better person for it. I learned how to take care of my family, no matter what.

Now, Heather and I strive to provide help and support to those currently fighting cancer today.  We hope that by sharing our story, we can inspire those people to never, ever give up hope, and to always keep fighting.

 

 

Guest Blog Post – The Biologic Picture of Melanoma

Jeffrey A. Sosman, M.D., Director, Melanoma and Tumor Immunotherapy Program
Vanderbilt-Ingram Cancer Center

In the past 10 years, mutations found in melanoma (the most deadly form of skin cancer) have led directly to the development of effective therapies. One example is the BRAF mutation and its inhibitor drug vemurafenib.

The New York Times reported on a new finding uncovered in the DNA of a large number of melanomas tested with extensive DNA sequencing of the whole genome.  This new mutation found by two independent groups is actually not present in a gene that produces a functional protein or enzyme.  Instead, it is a mutation in the portion of the DNA that regulates the expression of an enzyme, telomerase. Telomerase protects the chromosomes from breakdown and the cell from death. High levels of telomerase are seen in many cancer cells, including melanoma, and it protects the cancer cells from a normal dying process.

In a mechanism previously never reported, the newly discovered mutation changes the regulatory portion of DNA so it may be very vulnerable towards activation. In this way, the mutation indirectly allows the telomerase level to increase.

This mutation is found in these exact locations in about 70 percent of melanomas. The mutation provides a link between the BRAF mutations and the regulatory portion of another gene.

The new discovery adds one more piece to the biologic puzzle of melanoma. With each additional piece we are closer to completing the biologic picture of melanoma, which will further our ability to define treatment approaches to kill this deadly cancer.

Cancer Prevention Tips from Dr. Margaret Cuomo

Our latest guest post is courtesy of Dr. Margaret Cuomo, the author of “A World Without Cancer,” a board-certified radiologist and an attending physician in diagnostic radiology at North Shore University Hospital in Manhasset, N.Y. for many years. Specializing in body imaging, involving CT, Ultrasound, MRI and interventional procedures, much of her practice was dedicated to the diagnosis of cancer and AIDS. She is the daughter of former New York Governor Mario Cuomo and Mrs. Matilda Cuomo and sister to Governor Andrew Cuomo and ABC’s Chris Cuomo. She resides in New York.
Here are her biggest tips for cancer prevention:
1. Attention to diet – Your “daily plate” should contain two-thirds whole grains, vegetables and fruits, and one-third lean protein, including poultry and fish. Cruciferous vegetables, including broccoli, cabbage and cauliflower contain cancer-fighting compounds. Green leafy vegetables such as spinach, kale, and collard greens also have anticarcinogenic activity. Cooked or processed tomatoes, including tomato juice and tomato sauce, contribute lycopene to your diet, which is a powerful antioxidant.
Berries such as strawberries and raspberries contain the cancer-fighting ellagic acid and blueberries are powerful antioxidants. Add the spice tumeric to your meals – which is being studied for its cancer-fighting properties.
Red meat should be eaten sparingly and processed meats should be eliminated from your diet. Avoid added sugar in beverages and avoid processed foods as much as possible. Buy organic products whenever possible. It’s a good investment in your good health.
2. Limit alcohol consumption – Alcohol has been linked to cancer risk. No more than one drink a day for women, or two drinks a day for men.
3. Stop smoking – which causes cancer for the smoker, and the person exposed to  second-hand smoke.
4. Vitamin D – Have your doctor check your blood level of vitamin D. 40-60 ng/ml is the level recommended by over 40 vitamin D experts for cancer prevention. If your blood level is below this range, a vitamin D supplement is recommended. Vitamin D can also be found in salmon, sardines, vitamin D-fortified milk and orange juice.
5. Exercise daily – Exercise is good for your mind and body. Overweight and obesity are known risk factors for cancer, as well as heart disease and diabetes. Keep physcially fit, and maintain a healthy weight.
Include physical activity in your daily life  – climb stairs instead of taking the elevator, or walk a few blocks rather than taking a subway or driving. Be a good role model for children – take frequent breaks from your computer – pace while on the phone – do jumping jacks – all of this can be done in your home or office.
6. Read labels on your consumer products and food packaging. If plastic bottles containing water or other beverages, or food containers, contain the number 3, 6, or 7 within a small triangle imprinted on the bottle or package, it contains BPA – a weak estrogen classified as  an “endocrine disruptor,”  that has been linked to breast , prostate, and ovarian cancers.
7.  Read the labels on your cosmetics, body washes, shampoos, toothpaste, and other personal care products , and do not purchase any that contain harmful chemicals such as parabens, pthalates, and triclosans. Good news: In August, 2012, Johnson and Johnson becamse the first consumer product company to commit to removing a variety of chemicals, including the known carcinogen, formaldehyde, from its consumer products (including its subsidiaries Neutrogena, Clean and Clear and Aveeno) by 2015. Hopefully, other major consumer product and cosmetic companies will step forward to follow this important initiative to protect the public’s health.

Coping with a Cancer Diagnosis

October is Breast Cancer Awareness Month, and we are excited to feature several guest bloggers on this topic. Today’s post is from Jimmie C. Holland, MD, Wayne E. Chapman Chair in Psychiatric Oncology and Attending Psychiatrist at Memorial Sloan-Kettering Cancer Center. She offers these tips for families who are dealing with a recent diagnosis:

1)      Communication is critically important between all members of the family. The more open and transparent it is, the better. Secrets usually turn out not to be helpful.

2)      Recognition of the stress on all family members. There is often a need for a family member to take on a new role (eg managing the household, cooking and caring for the patient) while also assuring that the job of the breadwinner continues. The role changes are difficult, both for those taking the new role, and for the person who is ill who must relinquish control and prior role to others; a “new normal” must be accepted by all.

3)      Frustration and even anger are going to occur; it should be identified as normal in these circumstances and become a topic for discussion among family members, often bringing them closer to one another by understanding how it feels to each one.

4)      There are families who pull together under stress and become all the stronger for it. They usually manage without help. However, some families lack cohesiveness and members are unable to support one another as would be helpful. It is important that these families ask for help. The American Psychosocial Oncology Helpline can help you find counselors in your community who can help: 1-866-276-7443.

Jimmie C. Holland, MD
Wayne E. Chapman Chair in Psychiatric Oncology
Attending Psychiatrist
Department of Psychiatry & Behavioral Sciences
Memorial Sloan-Kettering Cancer Center

Managing Breast Cancer Risk

October is Breast Cancer Awareness Month, and we are excited to feature several guest bloggers on this topic.  The first is Dr. James Holland, Distinguished Professor of Neoplastic Diseases  at Mount Sinai School of Medicine and the T.J. Martell Foundation’s Founding Research Scientist:

Every woman must think of breast cancer as a risk that can be managed better by attention than by negligence.

–  Starting at age 50 (and many think at age 40) mammograms are of great value in early diagnosis.

–  Other supplementary diagnostic methods include sonography and magnetic resonance imaging.

–  Self examination can help; professional examination is much better.

Early diagnosis markedly improves curability.

–  Although there are some known genetic predispositions, they account for less than one in ten breast cancers, and thus no woman is exempt.

– Although breast cancer occurs in men, the great preponderance in women establishes that estrogen is a critical component of its development.

– Post-menopausal hormonal replacement increases risk.

On prevention:

– Exercise is one preventive, and is free.

– Drugs that diminish estrogen effect on breast tissue, such as tamoxifen or raloxifen are valuable in women at high risk.

– We do not yet have a universal preventive, however.

Improved treatments:

– For early breast cancers removal of the entire breast is rarely needed.  Preservation of the breast is psychologically advantageous.

– After surgery, and sometimes even before, hormone therapy, radiation therapy,  chemotherapy and immunotherapy may all have roles to play in specific instances.

– Cure is possible most of the time, and even in the minority who are not cured, there are usually major benefits of treatment.

The day will come when we know how to prevent many if not most breast cancers without seriously compromising normal life (as has been true for lung cancer by tobacco avoidance, for skin cancer by sunshine avoidance, and for penile cancer by circumcision). Until then, alert attention, not fear, is the best path for today’s woman.

James F Holland MD
Distinguished Professor of Neoplastic Diseases
Mount Sinai School of Medicine