Cancer Matters — Perspectives from those who live it everyday.

The True Value of Volunteering

April 24th, 2013|Issues & Perspectives|By Vanessa Wasta

***This post was written by Deb Stewart, R.N., who leads a group of Survivor Volunteers in the Johns Hopkins Breast Center. In honor of National Volunteers Week, Deb pays tribute to her volunteer group and describes the value of volunteering. Like the volunteers we saw give their help during the Boston bombings, Deb's volunteers provide life-saving help and comfort. Volunteers everywhere: we salute you!

One needs only to raise their hand to volunteer--usually. I have been a GS leader, Sunday school teacher, a room mother and bird club secretary. Every volunteer experience enriches me and offers connection with others of like mind and purpose. The greatest of my volunteer experiences belongs to my membership in a community of breast cancer survivors. Diagnosed at age 25 more than three decades ago, I could not find anyone of my age with breast cancer. I was invited to join a volunteer-led support group formed by Johns Hopkins where much of my healing would be addressed. I signed on with the aim of being a volunteer group leader, which I did for three years.

Diagnosed with breast cancer 20 years later, I again looked for support and this time it would be from two Johns Hopkins Breast Center volunteers who would call me as I was making treatment decisions. We connected through their stories and their compassion. This would be my goal, to volunteer and to pass forward the same kindness. Along the way, like the volunteers, I realized my support of patients is not about me; it is about the person I am serving. This is the same with the walks and races for breast cancer; it is about the cause I am supporting, it is not about me.

Today, I coordinate the activities of the Hopkins Breast Center Volunteer team, 37 women and one man, (32 have had breast cancer). They tell me that they too are enriched through their volunteer experience. I have heard volunteers who say that they are surprised to receive more than they give. Another volunteer consistently says ‘thank you’ before she starts her volunteer day. A new volunteer recently wrote an email that said: “You and I talked some time ago about the ‘club’ of which none of us really chose to be a member, but now I feel, it is by choice that this involuntary club membership is turning into a community membership with a purpose. “ Our breast center Volunteers are a community of hope. We have a mission of service and along the way find meaning and unexpected fulfillment. Who would think having raising your hand would lead to such an experience.

Deb Stewart, BSN, RN
Nurse Navigator
Volunteer Coordinator for Johns Hopkins Breast Center

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Rally for Medical Research Draws Thousands

April 8th, 2013|Issues & Perspectives|By Vanessa Wasta

Johns Hopkins faculty, research technicians, postdoctoral and graduate students at the Rally for Medical Research

Thousand of scientists, clinicians, patients, students and advocates rallied today in Washington, D.C. to support federal funding of medical research. Across the street, the American Association for Cancer Research held its annual meeting, with scores of scientists revealing the fruits of their research, much of it funded by federal dollars. We heard from legislators, scientists, patients, parents and celebs at the Rally for Medical Research. If you missed it, I captured a few moments on video to mark the event:

Video: Rally for Medical Resarch

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Bo’s Song: Brave and True

March 19th, 2013|Patient Stories|By Vanessa Wasta

Savannah Outen, Bo Oliver and Leora Friedman

From left: Bo Oliver, Savannah Outen, and Music is Medicine founder Leora Friedman

Yesterday afternoon, singer Savannah Outen met Bo Oliver, a 16 year-old cancer patient at Johns Hopkins. She had spoken with him by phone a few times after learning about the Music is Medicine program, run by a group of Princeton students. The program encourages musicians to write and record songs for pediatric oncology patients, and proceeds from the song will fund research on these cancers, which are expected to be diagnosed in nearly 12,000 children this year.

Bo told Savannah he wanted he wanted an uplifting song, and, with songwriter Tom Harrison, she wrote "Brave and True." And, for the first time, Bo heard Savannah sing his song yesterday.

"I am strong.
I am brave and true...
...The world is smiling too."

Those are the lyrics that struck me yesterday when I heard Savannah sing. And, you might wonder how each of us can make a difference in the fight against cancer. Our senior writer has an answer, which she included in the following message in one of our recent publications:

"The story is told of a little boy who finds thousands of starfish washed upon the beach. How could he save them all? After all, what difference could one person possibly make? He reached down and threw one fish back in, then another. 'I made a difference to this one, and this one,' he said. Just suppose our community approached pediatric cancer in the same way. Suppose we could change how cancers are treated one child at a time. We can. We are."

"Brave and True" will be available soon on iTunes, and a video of Savannah's visit to meet Bo at Johns Hopkins will be posted in a few weeks.

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The Hope Project

March 7th, 2013|Issues & Perspectives|By Vanessa Wasta

***This post was written by Anna Ferguson, RN, BSN, research nurse and leader of The Hope Project at the Johns Hopkins Kimmel Cancer Center.

"Hope is the thing with feathers that perches in the soul..."
-Emily Dickinson

...and also in the pleading eyes of your patient that looks to you to make something positive out of their bleak circumstances. I can tell him what the physician already has - that the medicines we're trying aren't working, that we don't know of any that will, that we will support him in any way we can, and that we wish it could be different. I will tell him all of that, and he'll still say, "But you're not giving up hope, are you?"

He is in leukemia limbo hell, where you're not dying, but you're something short of really living. Where your blood counts keep you tethered to the hospital with bleeding and infection and transfusion needs lurking around every corner. Where, medically, there's very little to do except react to a variety of flares the body throws up. Where, as providers, we'll be saddened, but not surprised, when things take a turn for the worse.

So, where is the role of hope in this case? Have we given it up, as he suggests? Should we? Should he? The answer lies in helping this patient define what, besides the chance of a cure, brings him hope. If we rely solely on fulfilling the hope of cure in this case, we won’t have much to offer him. If we, however, react by saying “I can only hope for the things that you hope for. We’re telling you that we don’t know of any medicines to make your leukemia go away. Tell me what other things you’re hoping for. Think about today and tomorrow and next week, and tell me what brings you hope. Tell me what brings your life the most meaning and joy.”

Then, he thinks a little, cries a little, and tells you what he hopes for – for tomorrow, for next week, for next month.

...that he gets to his grandson's school play
...that he’s given a respite from nausea this weekend
...that he doesn’t need to stay for transfusions on Tuesday
...that the snow doesn't keep his sister from coming to visit
...that his medical team can find a way to juggle his meds and transfusion needs so that he can spend a weekend away at the beach with his wife
...that his blood counts look a little better today
...that his football team wins this weekend

As a provider, this now serves as an anchor for future conversations and decisions. This will be the discussion you refer back to and remind him of when the next crossroads or decision point is reached. You’ll be able to say, “I want to check in with you again about your hopes. Are the treatment decisions we’re making allowing you to accomplish the things that mean the most to you?”

This man wants to live a long time. Reframing his hopes to those that are attainable and realistic won’t be a magical moment where he leaves your office, skipping, with bluebirds chirping on his shoulder. He’ll be sad, contemplative, and thoughtful. But, he’ll call you a couple of days later with joy and a sense of accomplishment in his voice saying, “I did it. I made it to William’s school play. I wasn’t sure I was going to, but I did it.”

“Now,” he’ll say, “let’s get started on making that beach weekend happen.”

“We’re with you,” you’ll say, and you could swear you heard the faintest bluebird chirp in the background.

On November 30th, the Johns Hopkins Kimmel Cancer Center community convened a large audience for Grand Rounds to hear the first presentation of The Hope Project. This project, led by a multi-diciplinary team from our Cancer Center, seeks to elevate the concept of hope beyond its association with cure. To do this, the project aims to help cancer care providers talk with patients about hope in a realistic and nurturing way that encourages patients to define and refine over time what it is that brings them hope. The presentation was an important beginning to our conversations about how hope can help our patients manage their illnesses, independent of their prognosis. During the presentation, our own patients spoke eloquently about how the small, everyday hopes are the things that light their fire, keep them going, and inspire them. We heard, unequivocally, that hope matters to our patients and talked about how we, the providers, can play a positive and influential role in their experience of hope. We learned that asking the question: “What are you hoping for?” opens doors, starts conversations, keeps conversations going, personalizes care, and lets patients know that hope is about them, not their medical outcome.

Watch The Hope Project presented on Nov. 30 at Grand Rounds.

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Cancer News Review

October 19th, 2012|Issues & Perspectives|By Michelle Potter

In this month’s Cancer News Review podcast, Dr. William Nelson, director of the Johns Hopkins Kimmel Cancer Center, discusses top stories in cancer research ranging from ovarian cancer screenings to a recent lung cancer study.

First, Nelson broaches the topic of ovarian cancer screening recommendations issued by the United States Preventative Services Task Force (USPSTF) The USPSTF reaffirms their previous recommendation not to pursue routine ovarian cancer screening of healthy women. The task force bases their recommendations on a large study that examined women who were screened for ovarian cancer verses women following usual healthcare practices. The results showed no significant difference in reducing deaths from ovarian cancer. Many of the women who were screened had false positives, causing unneeded surgeries and complications. The Task Force included an important exception for women at a higher risk, including those with gene mutations such as BRCA 1 and 2 or a family history of ovarian or breast cancers. These women should be screened for ovarian cancer. Nelson believes that further research of how ovarian cancer begins and improved imaging technologies and blood tests will help early detection of ovarian cancer.

Also in the podcast, Nelson reviews a study in the British Medical Journal examining BRCA mutations and a higher risk of harm from imaging. Women in their twenties with developing breast ducts have a vulnerability to radiation exposure. If a woman receives radiation around the central part of her chest during this age, the risk for breast cancer increases. Women with BRCA mutations are at higher risk and should avoid radiation exposure from chest x-ray, mammogram and CT scan. Younger women should opt for an MRI rather than mammogram if needed.

Finally, Nelson discusses squamous cell lung cancer and genome sequencing in finding the best drugs for treatment of this disease. Mutations in certain genes can determine which drug will better treat this type of cancer. This knowledge may lead to more individualization of care

Program notes:

0:20 USPSTF recommendations regarding ovarian cancer screening
1:19 Screened group had a lot of false positives
2:16 BRCA 1 and 2 mutations are exceptions
3:12 Better sense of how ovarian cancers start
4:12 BRCA mutations confer higher risk for harm from imaging
5:12 Vulnerable period for radiation exposure
6:20 Mammography not as good a tool in younger women
7:20 Use MRI instead
7:33 Squamous lung cancer treatment
8:22 Sequencing cancer suggests best drugs
9:15 Mutation profile rather than morphology
9:42 End

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Waiting Room Observations

October 9th, 2012|Issues & Perspectives|By Valerie Matthews-Mehl

Valerie Mehl

Over the last thirty years, about every decade I’ve found myself in a cancer center waiting room--first in 1984 with my husband, in 1999 with my father, and now this year with my mother. Last week, I accompanied my mother on her regular visit. It was a busy day in the clinic, and as I looked around the filled waiting room, I began to notice something quite different from the first time, nearly 30 years ago, that I was there.

Thirty years ago, and even in 1999, the cancer center waiting room was unmistakable. Its patients looked different than those in other waiting rooms, with their bald heads and pale, masked faces. Today, that is not the case. It was difficult to separate the patients from those who accompanied them.

My waiting room observations affirmed the progress we are making. The crowded waiting room was a reminder that so many more people are surviving cancer, and even when our doctors cannot cure the disease; innovative targeted therapies are keeping it in check. The patients there provided silent testimony to the work of our brilliant scientists and clinicians. They pay tribute to the brave patients who came before them and paved the way for this progress by providing tumor, tissue, blood, and other samples for study. My observations from this waiting room filled with bright faces and full heads of hair, while not scientific, are evidence nonetheless that the new era of personalized, targeted treatments are working.

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New Breast Cancer Drug on the Horizon?

October 1st, 2012|Hot Topics|By Vanessa Wasta

In today's news, updated data on an experimental breast cancer drug called trastuzumab emtansine, or T-DM1, shows better survival (by five months) than a standard mix of two other drugs for metastatic breast cancer patients. We've talked often on this blog about the importance of taking these incremental steps toward finding the best cocktail of cancer drugs, with fewer side effects, that continues to push the boundaries of survival. Hopefully, this is a step in the right direction toward that purpose. And it marks the beginning of breast cancer awareness month. Below is a comment on the new findings from breast cancer program co-director Vered Stearns, M.D.

"Results from the EMILIA trial demonstrate that treatment of women with metastatic breast cancer whose tumor have progressed on multiple prior treatments were more likely to benefit from treatment with T-DM1 compared to the combination of lapatinib and capecitabine. Importantly, the new agent was associated with an improvement in overall survival, an outcome that is not always observed in phase III trials. Furthermore, the toxicity associated with T-DM1 is less extensive that is expected with the lapatinib and capcitabine combination. I expect that T-DM1 will be approved by the FDA in the next few months and will provide out patients with a new treatment approach. I also anticipate that the agent will be studied in early stages of the disease. - Vered Stearns, M.D.

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Cancer News Review

September 20th, 2012|Issues & Perspectives|By Michelle Potter

This month, Kimmel Cancer Center director William Nelson reviewed top stories in cancer research ranging from a partnership between a pharmaceutical company and a major academic health center, to new ways to deliver the drug Herceptin.

First, he discusses the recent partnership between pharmaceutical company, Novartis, and an academic health center, the University of Pennsylvania. Nelson says by bringing together academic centers that conduct research with pharmaceutical companies that turn drug treatments into products approved by regulatory agencies, helps expand potential. He also suggests we must structure these partnerships carefully to avoid corruption or conflicts of interest in bringing these two industries closer.

Next, Nelson describes a recent study that examines grapefruit juice and its ability to lower dosage for some chemotherapies. Nelson says that grapefruit and other related fruits contain inhibitors of drug breakdown. For instance, the drug rapamycin, used to treat graft rejection in certain cancers, isn’t as effective as it could be because the drug metabolizes or breaks down quickly. The study uses grapefruit juice to slow the breakdown of rapamycin, helping to make the drug more efficient.

Also in the podcast, he reviews a study from Johns Hopkins regarding prostate cancer and possible new treatments. Researchers have created and built a nanoparticle treatment that targets prostate cancer antigens. These targeted nanoparticles have two strategic functions of therapeutics and diagnostics, calling the treatment “theranostic”. The next step for this research will be clinical trials.

Finally, Nelson discusses a gentler way to deliver Herceptin, the antibody drug used to treat women with breast cancer. The drug can now be given in an injection through the skin, rather than intravenously. This new approach appears to be just as effective and easier to administer at home or other places. Nelson predicts we could see more of these improvements as well as delivering cancer drugs by pill in the future.

Program Notes:

0:30 Novartis and University of Pennsylvania partnership
1:24 Gene transfer to kill CLL cells
2:22 More of these types of partnerships?
3:11 Grapefruit juice reduces dosage of chemo drugs?
4:12 Can help slow down metabolism of rapamycin
5:21 Combining two strategies to attack prostate cancer
6:17 A ‘theranostic’
7:01 Kinder gentler way to deliver Herceptin
8:01 Appears to be just as effective as IV mode
9:20 End

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Sharsheret

September 14th, 2012|Issues & Perspectives|By Evan Lipson

Evan Lipson, M.D.

Rochelle Shoretz was first diagnosed with early stage breast cancer at age 28, and then with metastatic breast cancer at age 37. She is now the founder and executive director of Sharsheret, a national non-profit organization that provides support and resources to young Jewish women and their families facing breast cancer. Despite the sadness her experience with cancer may have brought her and her loved ones, Shoretz says cancer gave her an opportunity to do what she loves and put her skills to use for an amazing cause. "When I reflect on my own life, because of what I've done with cancer, I've had it all," she says. Shoretz believes the impact of the cancer community is great and feels privileged to be part of that voice.

Click below to hear Rochelle tell her story.

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The Data

August 27th, 2012|Hot Topics|By Michelle Potter

The following post was written by Jason Cherish, a colorectal cancer patient on his CaringBridge Journal page regarding his treatment and involvement with Swim Across America Baltimore.

Jason Cherish and his girlfriend, Morgan

"I am really going to miss my chemotherapy treatments," said nobody. Ever.

Having said that, I am very fortunate to be undergoing these treatments for my diagnosis, colorectal cancer. The data suggests that when a male my age with a similar pathology report has the opportunity to enjoy these Xeloda pills and Oxaliplatin infusion treatments, the chances of that male's cancer recurring are reduced by 15%. My doctors tell me that without chemotherapy there was a 35% chance that anal-Qaeda would re-spawn. Now I am looking at 20%. Those are decent odds, no doubt, but it is important that I am ready to kick cancer in the teeth again should I end up on the 2 in 10 side of that proportion. I mean, let's be honest, when I woke up Friday, November 4, 2011 the stats said I had an infinitesimally minor chance of being diagnosed with cancer later that day...but reality said there was a 100% chance I had already had it.

My point is that statistics are more reassuring when you stay on their good side...and the good news is the "good side" of cancer survival statistics is bigger today than it has ever been. The bad news is it ain't nearly big enough.

A lot of people will tell you that beating cancer is all about staying positive. The problem is, we can all name some great people with positive attitudes that cancer took from us. I've mentioned some of them here before. Of course my faith in God has been integral to weathering this fight, and I certainly believe that mental toughness and a warrior's spirit are nice to have in this situation...but if Peter Bergen could have interviewed anal-Qaeda before Doc Hopkins and I commenced the cancer curbstomp, I think anal-Qaeda would have told Peter that it was way more concerned about the radiation, surgery, and chemotherapy than my sunny disposition.

I am beginning my 10th week of chemotherapy and finished my fourth (of six) infusions on Thursday. And with the exception of Round 2, which culminated with me spending the 4th of July in the George Washington University Hospital emergency room, I've won every round. Some days are physically taxing, and the side effects are pretty doggone annoying, but the data suggests that if I just keep putting one foot in front of the other, there is a good chance that I will get to move on with my life in late September.

Deep down, however, the fact that I (probably) get to live while better men and women lose the same fight really bothers me. The reason I am fighting hard and trying to keep the "poor me" to a minimum is that I am acutely aware of how lucky I am to be experiencing any side effect other than death. Living is also a potential side-effect of radiation, surgery, and chemotherapy and I think I owe it to a lot of people to see what I can to do promulgate it.

A few months ago I got involved with an organization known as Swim Across America (SAA). SAA uses swimming-related events as a vehicle to raise money and awareness for cancer research, prevention and treatment. I've already had the pleasure of interacting with a number of SAA volunteers, including several Olympians, but being the beneficiary of life saving research, facilities, and treatments funded by SAA is by far the biggest pleasure I owe to the organization.

I was first approached by Hopkins about getting involved with SAA in May...they asked if I would be willing to tell "my story" as part of a short promotional video. At first I thought we were talking about a 30 second cameo as part of some larger production...but as it turns out we spent two fun filled days shooting footage. The video was produced by my new friend Laurie Singer Sievers. Laurie is an award winning network television news producer having won six Edward R. Murrow Awards and a National Emmy. She has produced numerous news programs for CBS, NBC and ABC, covered six Olympic Games, 12 Super Bowls, 12 World Series and 10 NCAA Final Four Tournaments. It was really special to hear Laurie's stories about Michael Jordan over lunch on the farm, but I felt a kinship with Laurie for other reasons as well.

Laurie lost her husband, Leroy, to cancer in 2008. Leroy, an award winning war correspondent, was diagnosed with colon cancer in 2001. He beat it, but four years later, the cancer returned in his brain and lungs. Leroy was told he had less than six months to live, but he soldiered on for almost three more years of radiation, chemotherapy, and surgery. During the fight, Leroy used his professional gifts to strike a chord with the cancer-fighting community. In the honest, unvarnished, authentic tone only a veteran war correspondent can muster, Leroy relayed his own fight with cancer on NPR and via a daily blog called "My Cancer."

Leroy not only talked about the all too familiar polite/awkward silences that come with cancer, he also chronicled his internal monologue about whether or not it was still worth it to see his optometrist or buy new pants. He also hoped, publicly, for things like living long enough to read the final volume of the Harry Potter series. He did live long enough to finish the series and report about it on his blog, but in 2008 Leroy learned his cancer was growing uncontrollably all over his body and that his doctors were out of treatment options. Leroy passed away on August 15, 2008. His "My Cancer" blog, renamed "Our Cancer," is just one of many parts of Leroy that live on to this day. Laurie continues to pen updates and a community has formed around the blog at Hopkins and beyond.

What kills me about Leroy's story is that we ran out of treatment options to give him long before Leroy ran out of the will to live. I can't speak for Laurie, but I am involved with Swim Across America because I don't think that should ever happen.

To that end, the Baltimore SAA chapter raised over $900,000 for the Swim Across America Lab at the Sidney Kimmel Cancer Center at Johns Hopkins since 2010. Morgan, my girlfriend and I want to contribute financially too. So Morgan is currently training for an SAA mile swim event at the Meadowbrook Aquatic and Fitness Club in Baltimore, home of the Michael Phelps Swim School. The swim takes place on September 23rd, 2012...three days after my (hopefully) last Oxaliplatin infusion. If you are interested in swimming or donating please let me know.

Visit our Team Bear page.