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.

Genetic Evaluation and Testing for Cancer – Guest Post

Many thanks to Georgia L. Wiesner, M.D., Director, Vanderbilt Hereditary Cancer Program, for this informative guest blog post.

Recent headlines about Angelina Jolie, a well-known actress and movie producer, and her decision to have a prophylactic bilateral mastectomy to reduce risk for breast cancer have taken the world by surprise. In a recent article, Ms. Jolie outlined her genetic evaluation in which she was found to be the carrier of a mutation in a gene called BRCA1. Because of her gene status, she decided to reduce risk for breast cancer by removing her normal breast tissue.

Why would someone choose to have such a “radical” response to cancer risk? In order to understand the dilemma that many people face, it is important to know that Ms. Jolie’s situation is relatively unusual. In fact, mutations in BRCA1 and BRCA2 only account for 5 percent to 10 percent of breast cancers and 10 percent to 15 percent of all ovarian cancers every year. If a person is found to have a high-risk mutation, then prophylactic surgeries are one of several high-risk management options.  In addition to surgery, there are certain medications as well as enhanced screening and surveillance available for these patients. An important point is that anyone considering this option should be evaluated by a specialist prior to making such an important decision.

The next question might be “how does someone know whether they are at high-risk for cancer?” Fortunately, there are genetic specialists and other health professionals who can help patients understand whether they are at high risk for cancer and then guide patients through the process of genetic testing. The process of genetic evaluation risk assessment and counseling is a new area of medicine called cancer genetics. Genetic professionals will use details from the family history to determine whether testing is a reasonable option.

The Vanderbilt-Ingram Cancer Center, a recognized leader in genetic medicine for cancer, has recently established the Clinical and Translational Hereditary Cancer Program with the primary mission to care for patients and families at high risk for cancer. Importantly, after patients are seen in the Hereditary Cancer Clinic, they can be referred to other caregivers, such as surgeons or high-risk nurse practitioners for further care.

Main Points

  • A small number of people will have an inherited risk for cancer
  • It is important to know your family history of cancer
  • Genetic evaluation and counseling is the first step in understanding cancer risk
  • The VICC Hereditary Cancer Clinic at Vanderbilt University Medical Center is open to all patients for full evaluation and counseling
  • Appointments can be made by calling (615) 343-7400

Georgia L. Wiesner, M.D.
Director, Vanderbilt Hereditary Cancer Program
Ingram Professor of Cancer Research and Professor of Medicine

Vanderbilt Researchers Find Potent Genetic Risk Factor for Breast Cancer

Researchers at Vanderbilt University have found a powerful new genetic risk factor for breast cancer.

Using data from population-based studies of women in Shanghai, China, Jirong Long, Ph.D., assistant professor of Medicine, and colleagues discovered a deletion in a cluster of genes, called APOBEC3 genes, that are known to trigger DNA mutation and which have previously been implicated in cancer.

If a woman has a deletion in one of the two sets of genes she inherits from her parents, her risk of breast cancer increases by 31 percent. If the deletion is present in both sets of genes, her risk increases by 76 percent.

“This is the first copy number variation or CNV identified for breast cancer and is one of the strongest common genetic risk variants identified so far for breast cancer,” the researchers reported in the Journal of the National Cancer Institute.

For the full article, please click here.

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.

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