Cancer Matters — Perspectives from those who live it everyday.

Part 3: Bonds that Bring Us Closer

August 2nd, 2011|Issues & Perspectives|By Elissa Bantug

Elissa Bantug

My fellow team member Julie Thomas raised $13,760 this year alone, in her eleventh Avon Walk. Julie’s been raising money for breast cancer for almost 20 years now, ever since losing a close friend to the disease. She approaches the task with gusto, maintaining a donor list of 200 names, including family, friends, colleagues, and all of their friends. Each January through the end of April, she sends a monthly email to her list with a slightly different fundraising message. After the Avon walk, Julie’s donors receive an email thank-you, a link to a photo album of the walk, and a reminder about the next event. Julie has raised more than $64,000 for Avon. It’s a feat that could inspire many, and Julie has created a network of people who feel like they’re an integral part of this mission.

Debby Stewart, our fearless team leader, participates in the Avon walk and says she’s grateful for her own blessings, and the Walk provides the inspiration she needs in her volunteer work with breast cancer patients. This was Debby’s eighth walk, and she has created an amazing team of walkers and cheerleaders, who have become a noticeable presence in the D.C. Walk. When I asked Debby why she does this year after year, she said, “I do it for every new patient I meet and for every study that brings us closer to better treatment or even a cure. I also walk to remember all of the many faces we have lost to this terrible disease.”

In February of this year, we lost a very dear friend and dedicated volunteer, Rosemary Carlson, who supported the Avon Walk for years and created cheers in previous years that inspired us throughout the two-day journey. This year, our Johns Hopkins Cheering Squad, dressed in pink scrubs and strategically placed along the walk route, carried her message as they stood waiting for us, handing out snacks and wet wipes. Ahh…the wet wipes. They seem to come out of nowhere and are almost as important as the band aids. Wet wipes enable walkers to temporarily remove the sweat, grim, and filth that seems to cover every inch of your body after walking through a city for 12 hours straight. This is just one of many reasons that makes the volunteers invaluable!

Debby is truly an inspiration to all of our team and brings together an amazing group of walkers and volunteers who support each other along this two-day journey. Her motivation is to honor her friends, patients, and colleagues—to make meaning of their pain and their deaths in a way that may eventually mitigate others’ losses.

Next...
Part 4: Why I Walk

Previously...
Part 1: Why We Walk
Part 2: Walk the Talk

More on Breast Cancer Survivorship

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5 Ways to Beat Fatigue During Chemotherapy

July 18th, 2011|Hot Topics|By Michelle Potter

Michelle Potter

Fatigue during cancer treatment can be tough to manage. While ranging from mild to extreme, for some there’s no tired like “chemo tired.” Many patients describe it as feeling weak, weary, worn out, heavy or slow and it can be difficult for friends, family or co-workers to understand. No one wants to drag through the day, and for cancer patients, it’s particularly important to find strategies to help fight fatigue. Remember, talk to you doctor before starting any physical activity or changing your diet.

1. Surprisingly exercise will boost your energy levels. It’s important to get even a small amount of exercise in each day. For example, walking up and down the steps in your house can give you a lift. Or, a brisk walk outside for 10 minutes will get your endorphins flowing -- the hormone that sends pleasure signals to the brain.

2. It’s important to spread activities throughout your day and take frequent rest breaks.

3. Eat high protein foods such as milk, eggs, cheese, meat and fish and talk to your doctor about seeing a dietician if you are having problems eating.

4. Set up regular bedtime and waking routines.

5. Try reducing your stress levels with slow breathing exercises and relaxation techniques

Check out our full list to manage fatigue

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Amy’s Diary

July 8th, 2011|Issues & Perspectives|By Evan Lipson

Evan Lipson, M.D.

As oncologists, we encourage our patients to seek support wherever they can find it - family, friends, religious organizations, community groups... In the last decade or so, thanks to people like Amy Ohm, opportunities for support have begun to emerge on the Web.

Several years ago, after Amy was diagnosed with melanoma, she looked online to find information about her disease and to connect with other survivors. Finding little, she founded TreatmentDiaries.com, a social network for people living with or caring for someone with a chronic illness.

Click below to hear her story.

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Part 2: Walk the Talk

July 6th, 2011|Issues & Perspectives|By Elissa Bantug

Elissa Bantug

It’s not every day that you commit to walking 40 miles in the heat and rain, but on April 30 of this year, I walked in my second D.C. Avon Walk for Breast Cancer as part of the Johns Hopkins Breast Center Team. This quite a contrast from my humbling beginning 19 years ago with my first Susan G. Komen Race for the Cure 5k walk.

I have often been asked why I would take on such a daunting activity that takes months of planning, training, coordinating, and fundraising. Part of it is definitely my own ego: not only have I survived breast cancer twice, but I’m still able to walk 40 miles in two days. More than anything, though, I do it because I really believe that the more we talk, raise money, write letters, and walk for breast cancer, the closer we come to a cure.

You can’t take walking 40 miles lightly, and the strategies to physically manage such a challenge are unique. Imagine the possibility of walking in 100-degree heat or pouring rain; with painful blisters and sore feet, and you’ll begin to understand.

One of the medics last year told me that the number one reason why walkers are unable to finish the 40 miles is not exhaustion, but blisters. We were warned many times—by walk organizers, past walkers, and other supporters--to take good care of our feet. Blisters don’t only interfere with finishing the walk, but also make the experience miserable. It is not uncommon to see walkers on the second day hobbling along in flip flops as they try to cross the finish line.

There are many suggestions that are recommended to try to prevent blisters: trying to build up calluses on your feet in the weeks before the event; buying shoes a ½ size too big to accommodate feet swelling; wearing special socks to prevent moisture on your feet; changing shoes and socks throughout the two days to prevent rubbing; and/or covering your feet with something to prevent friction. Last year, I heeded all of these suggestions (including covering and recovering my feet with Vaseline every few miles). Luckily, my blisters were kept to a minimum. A stroll past the medic tents at any of the rest stops will emphasize the importance of this as they insert needles into blisters to drain them.

This year, a fellow walker and I were not going to take any chances and decided to take these warnings a step further. We covered our feet with silicone-based lubricant. After two days and forty miles, our feet had never felt so smooth—and we were the talk of the walk!!

The Avon Walk requires participants to raise a minimum of $1,800 to take part in the event — it’s why most participants hesitate to sign on. Last year, I agonized, fretted and stressed and barely made it. This year, with a bit of experience and a competitive spirit, I tackled the challenge head-on: soliciting all my email contacts and Facebook friends; guest-bartending one evening; and helping to coordinate a silent auction. Through my own resourcefulness, I learned an important lesson: raising my own personal minimum dollar amount is not only a preliminary step to the event, but rather an integral part of the Avon (and Komen) mission of raising funds for breast cancer. I not only challenged my body to raise awareness for breast cancer by fighting illness with fitness, I challenged my intellect to raise more money for new research, screening, treatment, and survivorship programs. My grand total this year was $2,110.

Next:
Part 3: Bonds That Bring Us Closer
Part 4: Why I Walk

Previously...
Part 1: Why We Walk, June 22

Lung Cancer: Still the Top Cancer Killer

June 30th, 2011|Hot Topics|By Vanessa Wasta

Vanessa Wasta

Recent news of the full results of the National Lung Screening Trial (NLST) published in the New England Journal of Medicine underscores the heavy toll that lung cancer takes on many lives. It's still the deadliest of all cancers. For Phyllis Curtis, who had enrolled in the trial at Johns Hopkins, the trial and screening she received made the difference in spotting her lung cancer and receiving prompt treatment. Read the ABCNews.com story. Earlier this year, evidence indicated that lung cancer death rates in women are on the decline, following a trend seen in men. The hope is that a screening method can make further impact on death rates.

As for treating these cancers, Drs. Julie Brahmer and Susanna Ulahannan of Johns Hopkins, provided a brief review of available lung cancer treatments on EmpowHer.com. They describe drugs, including ones that target cancer blood vessels, that are approved and in development for lung cancer.

Finally, Dr. Charles Rudin, in our educational video series, C-Answers, describes how many lung cancer patients are benefitting from personalized approaches to treating their disease by searching for biomarkers that indicate whether a particular drug may work for them. Watch his video below.

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Avastin: Good Drug, Bad Decision?

June 29th, 2011|Hot Topics|By Valerie Matthews-Mehl

Valerie Mehl

Recent news that the FDA will not approve the use of the drug Avastin for breast cancer has many patients who have benefitted questioning why. Kimmel Cancer Center director William Nelson believes it is a perfect example of why personalized cancer medicine—getting the right drugs to the right patients—is so important.

“Often in trials, drugs do not look impressive, but that’s because we test them on everyone,” says Nelson. “We need to start studying them in patients, based on the genetic profile of their cancers. These are the patients where they are most likely to work.”

Avastin, he says is a timely example. Does it work in breast cancer? Despite the recent FDA decision, some women are benefitting. The problem is that when the data for all breast cancer patients is analyzed, it appears to be largely ineffective. Nelson believes researchers must look at the women it has helped, decipher the mechanism, and get it to those patients where it is most likely to make a difference. “If we treat those our science shows it will benefit—and only them—the data immediately look better; we improve patient outcomes, and save money. This is what personalized medicine is all about.”

Top Cancer News

June 23rd, 2011|Hot Topics|By Vanessa Wasta

This month, in Dr. Bill Nelson's Cancer News Review podcast, you'll hear about cell phone hazards, breast and prostate cancer prevention drugs, and screening for ovarian cancer.

The World Health Organization recently listed cell phones as a probable cause of certain cancers. There is a persistent worry that cell phones may have health hazards, and Nelson gives his take on the controversial issue. He says that cell phones emit a type of radiation very different from the type that is given off from power plants. "It's more like microwave radiation," he says. "The fear is that the radiation emitted into your ear as you use the cell phone might 'heat up' your ear, skull and brain a little bit." Nelson says that the impact of such radiation remains unclear. There has not been an increase in brain cancer rates that can be attributed to cell phones, but, Nelson says, no one knows the lag time for which these devices could cause brain cancer. Read our recent blog post citing a Johns Hopkins Bloomberg School of Public Health expert discussing the issue.

Next, Nelson discusses a study of aromatase inhibitor drugs, given in a randomized, placebo-based clinical trial to women at high risk for breast cancer. Nelson says that the trial showed aromatase inhibitors clearly reduced risk for breast cancer, but the side effects of the drugs, including hot flashes, may dissuade women from taking them. He says more studies are needed to more precisely predict an individual women's risk for breast cancer.

Also among the top news in cancer was a study on standard screening methods for ovarian cancer. Nelson says that everyone agrees better early detection would improve the chances that current treatments could cure the disease. But the recent study showed current screening methods of measuring CA125 levels and ultrasound to look more closely at the ovaries has no benefit in reducing ovarian cancer mortality in women who received regular screening compared with women who did not. These are disappointing results, says Nelson, and the study suggests that these screening tools are not detecting cancers at earlier stages.

Finally, two drugs typically used to treat prostate enlargement and male pattern baldness -- dutasteride and finasteride -- now will include an FDA warning regarding an increased risk for high-grade prostate cancer. A study showed that overall prostate cancer risk was reduced, but the risk for more advanced, deadly prostate cancers increased in men taking the drugs. Nelson says the reason for this is not clear. Benign enlarged prostate disease is common, according to Nelson, and he says options for patients may include another class of agents -- alpha-blocker drugs -- that reduce muscle tone around the prostate.

Program notes:

0:15 WHO and cell phones causing cancer
1:04 Probably carcinogenic
2:05 Won’t do a comparative study
2:24 Exemestane for women at risk for breast cancer
3:16 I don’t think it will be more acceptable for women
3:50 No benefit for ovarian cancer screening
4:50 Randomized to blood tests and ultrasound
5:52 Dutasteride and finasteride warning
6:50 These drugs driving appearance of high grade cancers?
7:37 Be vigilant to look for prostate cancer
8:34 Reduce the size of the prostate
9:20 End

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Why We Walk

June 22nd, 2011|Issues & Perspectives|By Elissa Bantug

Elissa Bantug

Have you ever considered joining a walk/run/swim or other athletic event to benefit a cause that has special meaning to you? I never thought that participating in my first event would become even more personal, and I didn’t anticipate that the bonds I formed would help me deal with my own issues.

This is the first of a four-part series on my experiences at the Avon Walk for Breast Cancer.

Part 1: Humbled by our beginnings

In 1992, my mom was first diagnosed with breast cancer. That spring, my sisters and I joined her in what was then a new form of self-empowerment and awareness-raising: the DC Race for the Cure (now known as the Susan G. Komen Global Race for the Cure). For the first time, we donned oversized t-shirts, pinned bibs and slathered sunscreen, and walked the streets of Washington, D.C., cheered on by a network of volunteers, activists, and other supporters. We didn’t know we were trendsetters then, but I do remember feeling something new about my mother’s disease and struggle to regain wellness. I think these early walks planted a seed for something I came to better understand years later.

It’s complicated. The walks are a celebration of life and yet a memoriam for those we have lost. What is felt by one person in one family expands to a network of patients, survivors, care-providers, and fundraisers. They inspire us to fight another day, but remind us of how far we need to travel. My own journey didn’t end with that first event in 1992 in honor and celebration of my mother. It became more personal when I was diagnosed with breast cancer at age 23.

I’ve grown from being a 10-year-old daughter of someone grappling with the disease and its aftermath; to being a patient and then a survivor myself, and now dedicating my work and my own need to make a difference in the world to eradicating breast cancer.

Since that first walk in 1992 with my mother and sisters, I have chosen to participate in a couple of walks, runs, and fundraisers benefiting breast cancer yearly. It has become one of the ways I have chosen to get and stay involved. Surprisingly, the year after I became a survivor was the most challenging for me to participate in events. This was less to do with the physical side-effects from treatment but rather the emotional complexity that I was grappling with -- I had become the new face of breast cancer and was no longer just a supporter. Nothing in my previous 23 years had prepared me to deal with the shocked and sympathetic looks and intrusive questions that comes with someone so young having breast cancer. Compete strangers would ask questions like, how old was I at diagnosis; did I have a family history of breast cancer; was I BRCA positive; did I smoke; or my personal favorite- had I ever used oral contraceptives.

The good news is the further away I moved from my initial diagnosis, the more comfortable I eventually became with being part of this group. The same experiences that I viewed as devastating at 23 have now truly given me perspective and a platform that allows me to hopefully provide strength to others.

Next...
Part 2: Walk The Talk
Part 3: Bonds that Bring Us Closer
Part 4: Why I Walk

More on Breast Cancer Survivorship

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What is Hope?

June 14th, 2011|Issues & Perspectives|By Michelle Potter

Michelle Potter

What does it mean to have hope, to be hopeful? Each of us have our own very personal ways we might answer such a big question. But, what if you were a child with a cancer or a parent with a child who had cancer? What if you asked that question of a nurse or doctor who treats childhood cancer? Could we possibly expect them to be hopeful? The answers might surprise you and challenge what you may have come to expect about pediatric cancers. Each time I visit our pediatric oncology clinic or inpatient unit, I'm struck by how much hope there is. It's awe inspiring. Before I worked at Johns Hopkins, I couldn't imagine how a child or their family could cope with such an illness. Now, I know several patients -- survivors - they make me smile and give me hope -- not just because I want them to be OK, but because there is so much progress being made. Have we solved all the issues that children with cancer have? No way and sadly, not every child makes it. That's why we have to keep pushing, working hard for them and bringing more hope for tomorrow.

Do you have hope? Tell us why.

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Frank and Ellen give back

June 10th, 2011|Issues & Perspectives|By Evan Lipson

Evan Lipson, M.D.

As an oncologist, my patients frequently talk to me about the ways they "give back." Frank Potepan fought lymphoma in the 1990s, and for the last several years has been involved in developing a local hospice program. For Frank and his wife, Ellen, it's a chance to show their gratitude and a rewarding and meaningful way to support the cancer care community. Click below to hear their story.

Perspectives from those who live it everyday.

Part 3: Bonds that Bring Us Closer

5 Ways to Beat Fatigue During Chemotherapy

Amy’s Diary

Part 2: Walk the Talk

Lung Cancer: Still the Top Cancer Killer

Avastin: Good Drug, Bad Decision?

Top Cancer News

Why We Walk

What is Hope?

Frank and Ellen give back

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