"You can't sit on the sidelines. You've got to be involved." -- MD Anderson caregiver
Caregivers' concerns are embedded in their stories.
As
a nurse caring for patients undergoing stem cell transplantation, Lori
Williams, Ph.D., has heard many stories from family caregivers. Bedside
and clinic nurses tend to have more contact with caregivers than do
other medical personnel, she says,. Her close contact led her to prepare
her dissertation on coping and caring for caregivers.
"Caregivers
are an absolute necessity," says Williams, now an assistant professor
in the Department of Symptom Research at MD Anderson.
Informal
or family caregivers, she explains, typically are unpaid family members,
friends or neighbors. According to a 2007 study, if a monetary value
were assigned to their contributions, the total would exceed $350
billion.
"Our health care system would come to a screeching halt
if that value were added to the current health care deficit," Williams
adds.
Val Marshall's cancer journey began in May 2009 when her son Addison was diagnosed with acute lymphocytic leukemia. A visit to the family doctor for what they thought was a simple high school football injury turned out to be so much more.
Inspired
by her son's strength and hope, Val strives to be a voice to help
connect other parents on this journey. Her series shares insight into
her life as a mom of a typical teenager who just happens to be fighting
leukemia.
Addie checked off the giant red letters on the calendar that represent 16 long days of proton radiation to his brain and spine. Radiation
started on a rough note, but typical MD Anderson snapped to attention
when I reported at midnight one night that Addie mentioned the sounds
and side effects were causing him anxiety.
Take a moment and think about someone close to you who's died. A grandparent, parent or friend . . . it can be anyone.
Were
there any parts of themselves they left behind for you to remember? It
could be anything: a recipe, picture, diary or family heirloom? It could
be something as simple as a conversation the two of you had about what
was important to him or her.
Intentional or not, we all leave
behind these pieces of ourselves that others will remember us by. These
memories, these mementos are our legacy.
A diagnosis of cancer
often leads people to think about their legacy and what they're leaving
behind. Initially, those thoughts may focus on financial matters. But as
time passes, there's almost always a shift to the existential.
Unfortunately, all too often, these thoughts stay thoughts and aren't actually put into motion.
"Legacy
work" is the process of transforming these thoughts into action. It's
the act of sitting down and taking time to purposefully create something
for the people you love and care about.
By Lyndie Charnock Mike Charnock of Houston, TX., was treated for high blood pressure and enlarged lymphnodes before doctors found the real cause. On July 26, 2010 at age 35, he was diagnosed with a Stage IV Lung Cancer which had spread to his brain as well. With a brain surgery under his belt and a strong treatment plan, Mike is defying the odds every day.
His wife, Lyndie Charnock, wants to share her experiences as a caregiver to encourage others that no matter what cancer you are fighting or how different the journey - with complete faith and a good attitude you too can defy all odds!
"If
children have the ability to ignore all odds and percentages, then
maybe we can all learn from them. When you think about it, what other
choice is there but to hope? We have two options, medically and
emotionally: give up or fight like hell." -- Lance Armstrong
Since
Mike's diagnosis, this has become one of my favorite quotes. Never in a
million years did I think, at 35, my husband would be diagnosed with
stage IV lung cancer. At the time, his cancer was spreading to his brain. If treatment didn't work, he had a prognosis of six months to live.
That being said, I'm honored to be here now with Mike, to share our story with you.
Though
this is my first entry, I hope to have many more posts on Cancerwise. I
feel compelled not to start from the very beginning, but from where I
stand right now.
It's anything but breezy or easy. However, with the
right mentality, support of family and friends, and above all else God
in your life, you have a better chance of defeating this disease.
In
June, Christy Little and her family traveled to MD Anderson from
Birmingham, Ala., for treatment for her stepfather. What could have been
an overwhelming and confusing experience became a journey of surprising
joy and hope as the family encountered generous and resilient fellow
patients and encouraging staff members. This is the second part of a
reminiscence Little sent to Cancerwise.
We arrived bright and early on the day of my stepdad's first appointment to insure enough time to find our way around.
But MD Anderson was like no other hospital we'd encountered.
In
the vast lobby, we were greeted by a concierge who asked for our
schedule to see where we were going. She explained where we were
heading, then walked us there, talking to us and giving us information
as we went.
With a knowing smile, she told us that even though
we'd been told to take elevator B, Elevator A was faster, so we'd take a
little shortcut. She walked us all the way to the registration desk,
hugged us and said goodbye.
We already felt comfortable.
We made many friends as we moved through the process.
Could we all go back to the exam room with my stepdad? Of course.
Not only was the staff kind and helpful -- the patients were, too.
Some of you may be fans of the cable television series, "The Big C. In its second season, it tells the story of Cathy Jamison, a woman in her 40s who's diagnosed with stage IV melanoma.
Cancer turns her from a staid, conventional woman into a free spirit,
getting the most from each day, even though she's often sad and afraid.
In
a recent episode titled "Sexual Healing," the show explored the
relationship between Cathy and her husband, Paul. She's about to enter a
clinical trial
and is feeling exhausted. Paul keeps busy giving her shots and
preparing healthy, but inedible food. Meanwhile, their sex life is
headed out the window.
Paul tells Cathy that he doesn't miss
sex, but the next day catches him masturbating while looking at a
lingerie catalog. The truth comes out -- Paul is feeling very sexually
frustrated.
Cathy's solution is to make up a sexual fantasy for Paul, only to turn herself on. They end up having a great mutual encounter.
By G.S. Raju, MD., Department of Gastroenterology, MD Anderson Cancer Center and Roy Soetikno, MD, Department of Gastroenterology, Palo Alto VA Medical Center, Stanford Medical School, Palo Alto.
Colon cancer is
relatively common. Slightly more than 1 in 20 Americans will develop it
during their lifetime. Unlike many other cancers, however, colon cancer
is preventable.
Colonoscopy, the gold standard in colon cancer
prevention, is a simple procedure compared to the emotional and physical
turmoil that one would go through dealing with colon cancer. All that
is required is taking the time off to prepare for and undergo the
procedure.
Preparation is important Doing the
colon-cleansing well is critical to detecting flat lesions in the colon.
These lesions could otherwise be easily overlooked and benefits of
undergoing colonoscopy lost. MD Anderson Cancer Center has developed an
excellent educational video to help patients undergoing colonoscopy.
Flat lesions are challenging The
precursor of colon cancer is called a polyp. Many polyps are easy to
detect because they are shaped like a mushroom. The flat ones, however,
are more deadly and can easily be missed during colonoscopy, especially
when the colon is not clean. These subtle flat lesions also require a
special technique, called endoscopic mucosal resection, to remove them
safely and completely.
The survey may list MD Anderson as the number one hospital for cancer
care in the nation, but the honor is shared with every patient, survivor
and caregiver who has walked through its doors for care.
For the fifth year in a row, US News & World Report's
annual "Best Hospitals" survey ranked MD Anderson the nation's best
hospital for cancer care. This is the eighth time in the last 10 years
that MD Anderson has been honored with the top ranking. Since the survey
began in 1990, the center has been in the top two.
MD Anderson also was ranked number three among Houston metropolitan area hospitals in another portion of the survey.
In June, Christy Little and her family traveled to MD Anderson from
Birmingham, Ala., for treatment for her stepfather. What could have been
an overwhelming and confusing experience became a journey of surprising
joy and hope as the family encountered generous and resilient fellow
patients and encouraging staff members. This is the first part of a
reminiscence she sent to Cancerwise. The second part will appear on July
27th.
During the past few months, my family has faced a serious challenge.
In March, my stepdad of 18 years was diagnosed with cholangiocarcinoma, a rare, incurable bile duct cancer.
After
seeing several doctors in Birmingham, we were told there was no hope
beyond a small dose of palliative chemotherapy to give him a little
extra time.
We were looking at a few months to no more than a year.
We heard plenty of "I'm so sorrys." Saw many nods of the head.
For our family, this was unacceptable. We understood the difficulties we were facing but were not ready to throw in the towel.
This year, approximately 11,000 patients combined will be diagnosed with Hodgkin lymphoma (HL) and anaplastic large cell lymphoma (ALCL). Compared to other cancers, such as breast and lung, these two lymphomas are considered relatively rare cancers. So, chances are, you didn't hear the news about brentuximab vedotin (SGN-35), which is now called Adcetris.
HL and ALCL are potentially highly curable types of lymphoma when conventional chemotherapy regimens and radiation therapy are used. For this reason, no new drugs have been approved by the U.S. Food and Drug Administration for Hodgkin lymphoma since 1977.
But if you are one of the unlucky ones who aren't cured with these conventional regimens, today is a good day for you. Indeed, it's a good day for all of us. A good day for humanity. A new drug has been approved Today, the Oncologic Drugs Advisory Committee/ODAC, an FDA advisory panel, voted 10-0 to recommend accelerated approval for Adcetris to treat patients with relapsed Hodgkin lymphoma after having a stem cell transplant, and for patients with relapsed or resistant systemic ALCL.
Do you use a smartphone or tablet to manage everything in your life -- even your health?
Well,
you're not alone. A growing number of people are downloading health
apps to help with everything from weight loss to quitting smoking.
But
if you're like me, there's a good chance you don't end up using most of
the health apps you download -- at least not regularly. That's not
surprising, say our health technology experts.
"Many companies
are in such a hurry to sell their app that they don't conduct a study to
see if users will adopt real, lasting change," says Alexander Prokhorov, M.D., Ph.D., director of MD Anderson's e-Health Technology
Program and professor in the Department of Behavioral Science.
Here's some good news, though. There are some effective health apps out there -- if you know what to look for.
By Bob Ruggiero, director of publications and public information, Quilts, Inc
Since its 2002 inception, the Ovarian Cancer Quilt Project at MD Anderson has educated the public about the risk factors and symptoms of ovarian cancer through the artistry of quilting. The teal ribbon quilt block has been the hallmark of the project.
Quilters from MD Anderson's Ovarian Cancer Support Group
and the community have donated teal ribbon quilt blocks, which are then
made into quilts and displayed each year at the International Quilt
Festival in Houston. All who have been touched by ovarian cancer --
survivors, family members and friends -- have been invited to contribute
a block. Quilters from across the state and local quilt shops also have
created and donated hundreds of quilt blocks, plus entire quilts.
The quilt project and online auction benefit the Blanton-Davis Ovarian Cancer Research Program, which aims to develop effective screening methods and, ultimately, a cure for ovarian cancer through innovative research.
Nate Causey of Tupelo, Miss., was treated for TMJ and tension headaches before doctors found the real cause. At age 34, he was diagnosed with a central neurocytoma on May 7, 2010. Unexpected and rare complications left him with several disabilities, but with hard work and determination, Nate is beating the odds every day.
His wife, Genie Alice, wants to share her experiences as a caregiver to encourage others no matter where they are in the process of fighting cancer.
Many dream of a "normal" life -- a happy marriage, a couple of kids, a yard and a picket fence.
I
met Nate shortly after I graduated from college and fell hard. I had
never met anyone so kind, smart and good-looking! He eventually
proposed, and we had a perfect wedding. We were on the road to a
fabulous, "normal" life together.
A few months into the
marriage, while I was busy redecorating his "man cave," he started
having neck pain. Our family doctor treated him for tension headaches.
Then vision problems started, and he had an MRI. Devastating news The
tech, who looked like she had seen a ghost, sent us back to the
opthalmologist. He broke the devastating news that Nate had a large brain tumor.
By Lorianne Classen, senior health education specialist, Patient Education Office
Chanel
is one of the most cheerful people I have ever met. Her smile can light
up a room. I had the opportunity to meet her after she attended a patient education class at MD Anderson.
This
class provides information on side effects related to chemotherapy,
radiation and surgery. It also focuses on the role nutrition plays in
managing side effects and staying healthy through treatment. Taught by
an experienced nurse, the class gives patients and caregivers an
opportunity to have their specific questions answered.
For Chanel, mouth and throat sores
were an issue. They were making it difficult for her to eat. But thanks
to advice from the class instructor, she learned how to manage the
sores and relieve the discomfort.
She also received tips on
managing other side effects that were bothering her. According to
Chanel, after attending the class she felt "more prepared to handle the
battle ahead."
Patient education classes are offered on many
topics, such as fatigue, bowel management and diabetes.
Learn more about
the classes and hear about Chanel's experience.
You can also call the Patient Education Office at 713-792-7128.
This is one story in a continuing series of profiles on unsung heroes at MD Anderson -- people who do extraordinary things in the service of patients, their families or colleagues.
Helping patients look good and feel better A hero is often defined as a person of distinguished courage or ability, admired for his or her brave deeds and noble qualities. At MD Anderson, there are heroes around every corner. They're not just in white coats and scrubs. They're often behind the scenes making a difference in the everyday lives of our patients and their families.
Meet Maritza Valero. She began her journey at MD Anderson six years ago. With a degree in dentistry, Maritza's six-month volunteer position unexpectedly redirected her career path. She's now a supervisor in the Appearances shop in Mays Clinic. Appearances offers breast forms, bras and other specialty items for cancer patients.
"I help patients as they go through treatment and cope with the side effects of chemotherapy. I provide them with the right prostheses and bras and teach them how to wrap their scarves and turbans," Valero says. "I help them look good. When you look good, you feel better about yourself."
Of the approximately 76,000 new patients who will be diagnosed with non-Hodgkin lymphoma (NHL) this year, 15% will have peripheral T-cell lymphoma (PTCL).
The World Health Organization
(WHO) lists 21 major subtypes of mature PTCL. Therefore, because of the
relatively rare heterogeneity of the disease, PTCL is more challenging
than other types of NHL from diagnostic and therapeutic points of view.
To
meet these challenges, we've assembled a world-class team of medical
oncologists, dermatologists, radiation therapists, hematopathologists
and stem cell transplant experts to create a multidisciplinary T-cell
lymphoma working group. During the monthly meeting of our group, which I chair, we discuss challenging
cases and recent clinical and pre-clinical data in PTCL, in addition to
new concepts to design and conduct innovative clinical trials for PTCL
patients.
Our mission is to improve the cure rate of patients
with PTCL and reduce treatment-related toxicity by developing novel
targeted therapy using rationally designed small molecules, antibodies
and combination regimens of biologic agents.
By Tom Vetter, MD Anderson Cancer Center patient and volunteer
Tom Vetter was diagnosed with late-stage prostate cancer last July, but he continues to work full time and spends one day a week volunteering at MD Anderson.
My name is Tom Vetter and I'm a cancer patient at MD Anderson.
When diagnosed last year, I was told that there was no cure for my advanced stage of cancer. All that really could be done was to try and buy me as much time as possible. It was not long after that I decided to put some of my precious spare time to the best possible use. I'm a volunteer at the Mays Clinic Hospitality Center on my day off from work.
For four hours each Tuesday I'm blessed to be a very small part of an amazing group of people who bring hope, comfort and compassion to those who walk through MD Anderson's doors. I had never volunteered before and wasn't sure how I'd react to be surrounded by so many others who shared cancer. But very quickly, I realized how important it can be for someone to be able to talk with or just sit with someone who not only can understand your thoughts and feelings but shares them as well.
No one better for a cancer patient to relate to than another cancer patient.
Testicular cancer
is the most common cancer in men ages 20 to 34. Yet, it only accounts
for 1% of all cancers that occur in men. With early detection,
aggressive treatment and long-term, follow-up care, chances to cure this
rare cancer are high.
Louis Pisters, M.D., professor in MD Anderson's Department of Urology, answers questions about testicular cancer, how it's diagnosed, treatment options and more.
How common is testicular cancer?
Testicular
cancer is a rare cancer. Coupled with its rarity, is that it affects a
young population. Men from the ages of 15 to 40 encompass most of the
testicular cancer patient population.
To put it in a broader
perspective, compare testicular cancer to prostate cancer, the most
common non-skin-related cancer in men. According to American Cancer Society
estimates, there will be 8,290 cases of testicular cancer in the United
States in 2011, with 350 deaths. By comparison, there are expected to
be 240,890 men diagnosed with prostate cancer, with 33,720 deaths.
At
MD Anderson, we see approximately 100 testicular cancer patients a
year, and personally, I see two to four patients each month.
"You can't sit on the sidelines. You've got to be involved." -- MD Anderson caregiver
