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February 2014 Archives

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By Harley Hudson

As I sit here near MD Anderson's Sundial landmark watching people come and go, I see one thing they have in common:  hope. A woman just came in holding her young son's arm, his legs moving in an uncoordinated lurch. They come here hoping for a miracle. An older gentleman is leaving, oxygen tank cradled on the back of his wheel chair helping him to breath. With help, he gets into a car, hoping for a cure.

People come from all over the world to MD Anderson for cancer treatment. They all come with one thing on their minds that they cannot get at home: hope. As I look around and observe, I hear languages that I cannot understand. Every conversation expresses hope, not so much in the words, but the emotion.

The care teams here create healing protocols. In my opinion, patients who cannot be healed completely are given a better quality of life and extended years.

Coming to MD Anderson for a CLL clinical trial
I, for one, came hoping that MD Anderson could provide a cure for chronic lymphocytic leukemia (CLL), either through new drugs or a stem cell transplant. All other approved protocols had failed to control my disease. When I entered the clinical trial for ABT-199, I was given that hope. Now a new drug has been approved, ibrutinib. It was researched and tried at MD Anderson. Should ABT-199 cease working, this newly approved drug may be the next step. Even more drugs are on the horizon -- all giving hope for CLL patients, hope we didn't have even a few years ago.

brittanyhurst22714.jpgBy Brittany Hurst

2012 promised to be a great year for me. I was graduating from college in May and marrying the man of my dreams in the fall. But at the end of 2011, I started experiencing abdominal pain. It took nearly a year for doctors to figure the cause of my symptoms: ovarian cancer.

Life interrupted by ovarian cancer
Brandon proposed where we first met: on the beach. I was so surprised I forgot to say yes, leaving him kneeling in the sand until he finally said, "Are you going to say something."
On Sept. 15, 2012, we got married at a historic venue in downtown Dothan, Ala., my hometown. We spent the whole night dancing. It was the happiest day of my life.

But in the weeks that followed, the pain in my abdomen became worse. I had already had my gallbladder removed and made six trips to the emergency room earlier that year. No one could tell me what was wrong. Finally, during my seventh ER visit, just five weeks after our wedding, I was diagnosed after an exploratory surgery.

It was a lot to take in, hearing, "You have cancer." We asked the doctors where they send their family members for ovarian cancer treatment if it were them. They told us to go to MD Anderson.

bobschmidt.jpgBy Stephanie Schmidt

I'm pretty accustomed to Transportation Security Administration agents, little clear bags with less than 3.2 oz. of fluid, pat downs, bag searches, the mad rush to place all of your items into those plastic bins before putting them through the scanner, etc., but as a caregiver, traveling with a cancer patient was completely new to me.

A million questions raced through my mind as my dad and I prepared to fly to Houston for his colon cancer treatment. Do we need a doctor's note explaining that he cannot go through typical security scanning machines? Will other people be pushy and impatient, as it takes longer for us to go through security checks? The list goes on.

After numerous trips to and from MD Anderson, I'd consider myself a seasoned pro. Here's my advice for any other caregivers preparing to travel to Houston with a loved one for cancer treatment: 

Arrive earlier than you typically would.
Everything takes longer than you think it is going to, from checking in for a flight to waiting for TSA assistance for a wheelchair.

carlafallick22514.jpgBy Carla Fallick

About two years ago my dad was diagnosed with what we thought was terminal oral cancer. The day before Christmas 2011, we were told he had two months to live. My 24th birthday was exactly two months from that day.

Lucky for us not only was my dad there for my birthday two months later, he beat the odds and he was in remission about six months after that devastating prognosis. However, this Christmas we discovered my dad's cancer has returned. While some of the feelings I've experienced are all too familiar, I've decided to handle the situation differently this time.

My dad's oral cancer treatment

My dad endured several rounds of chemotherapy followed by radiation. The treatment left him unable to talk or even swallow for a long time. 

Seeing the pain my dad was living in was unbearable. It's very hard to see someone who you've spent your entire life looking up to, and thinking is invincible, in such pain.

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By Janet Tu, M.D.

You might forget an appointment, or where you last saw your car keys. Or you might struggle with remembering the name of an acquaintance you run into at the grocery store. Sometimes after chemotherapy, people experience side effects of cancer treatment including "foggy" moments or lapses in memory that can be frustrating, particularly since it can linger for a few months to long after chemotherapy is complete. Chemobrain can be challenging, but there are methods to help you cope.

Keep a calendar
Between work, family and social engagements, we all have a lot on our plates. Chemobrain can make keeping up with dates and appointments even more difficult. Spend time entering important dates in your calendar and check it regularly. Similarly, make lists of tasks you need to accomplish and cross them off when you've completed them.

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Like cancer patients, caregivers are subject to stress throughout their loved ones' cancer treatments. Taking time  to participate in a stress-relieving activity may help ease anxiety, especially if you're  traveling to MD Anderson from out of town or staying at the hospital for an extended time period. 

We offer a variety of programs and services especially for our caregivers. Here are six things caregivers can do while at MD Anderson:

Visit the chapels: For many caregivers, helping a loved one through their cancer journey is a test of faith. The Freeman-Dunn Chapel in the Main Building, the Muslim Prayer Room in the Main Building, the Louise J. Morgan Chapel in the Lowry and Peggy Mays Clinic are open to anyone of any faith who needs time to pray or meditate.

dougneal21814.jpgDoug Neal didn't waste a moment. After his prostate cancer diagnosis, he started researching, determined to find the best treatment. He talked to his friends and friends of friends. He consulted doctors and read books and various articles. Finding the right care that would help him beat prostate cancer was crucial.

 "I have people relying on me to stick around," Doug says.

Researching prostate cancer treatment
Two years ago, Doug's wife passed away after 23 years of marriage. The youngest of their children was still in high school.

"I became Mr. Mom," Doug says. It was an unexpected role for a commercial fisherman.

When Doug received his prostate cancer diagnosis, he was busy helping his son finish high school and to start a career as a chef. Another son's wife had just learned a baby was on the way -- Doug's first grandchild. Cancer didn't fit into the picture.

EmilyNeumann21714.jpgBy Emily Neumann

When my mom and dad called me downstairs to talk, I rolled my eyes. My grades hadn't been as good as they should have been my second semester of college, and I was not prepared to discuss it...again. What I didn't realize is the news that would come would shake me far worse than any plummet in my grades: My dad had cancer.

My dad's AML diagnosis and treatment

When my dad was initially diagnosed in El Paso, Texas, he was told he had chronic myeloid leukemia (CML) --which could be kept at bay for some time by using daily medications. My parents left for MD Anderson to get a second opinion, where they learned it actually was acute myeloid leukemia (AML)--and much worse than we first thought. My sister and I spent the summer at our home in El Paso while mom and dad went back and forth for treatments.

My dad's primary treatment -- a research chemotherapy that seemed to work on others -- failed on my dad. I vividly remember when my mom got the call with the brutal news. We were walking to the hospital. My mom broke down crying, my sister's shrieks echoed in the parking garage, and I was in shock.

AmandaWoodward.jpgBy Amanda Woodward

I'm a dog person. When I moved out of my parents' house to go to college I really wanted to get a dog of my own, but it just wasn't practical. I was in school and working full time, so I didn't have the time to properly care for a pet.

Then, in 2009, cancer happened. At 19 years old, I was diagnosed with stage 3b melanoma. I had to withdraw from school and move home.

What better time to get a dog, right? My parents weren't going to say no. Sure, it was a pity purchase, a cancer perk -- call it whatever you want. I was using my cancer as an excuse, but the truth was that I needed a silver lining.

Finding my very own therapy dog during melanoma treatment

I did my research and made plans to pick out a puppy just a few weeks after I finished the induction phase of my melanoma treatment.

hand holding heart shaped rock Cancerwise.JPGCT scans and chemotherapy sessions don't exactly make great dates. Coping with cancer treatment can be hard on couples, as it introduces new obstacles and challenges.

We talked to some of our patients and caregivers about what helped them grow closer to their partners during treatment. Here's their advice:

Communication is key.
"Cancer causes a variety of emotions for couples. In most ways, it brings you closer together and makes your relationship stronger. In other ways, it feels like you're a million miles apart, as you are both dealing with your own set of emotions.

Communication is key. As a caregiver, you will never fully understand what it's like to be on the other side and vice versa. Always talk about your emotions and try to understand each other. Also, make time for one another as a couple. Steve and I have date nights, weekend getaways, etc. But even just quiet time at home is great, too."  
--Jennifer Martin, melanoma caregiver

By Katrina Burton

MD Anderson is standing by a recommendation that women 40 years old and older receive annual mammograms, despite a recent study that raised controversy regarding breast cancer screening.

"We are not recommending that women change their screening practices," says Therese Bevers, M.D., medical director of MD Anderson's Cancer Prevention Center. "We stand by our guidelines that recommend women have annual mammograms beginning at age 40 and continue to be screened as long as they are in good health."

But a study by the Canadian National Breast Screening says annual mammography in women ages 40-59 does not reduce mortality from breast cancer and mammography screening should be revisited.

The results of the study, published in the BMJ Journal on Feb. 11, are in direct contrast to the U.S. Preventive Services Task Force recommendation that  women should begin annual mammograms starting at age 50, and of guidelines by MD Anderson, the American Cancer Society and others that call for annual breast cancer screening to begin at age 40.

erikaevans21314.jpgBy Erika Evans

You're getting ready to go to the hospital for your stem cell transplant. You've made your list, you've checked it twice. You're ready.

But there's nothing like the wisdom that comes from experience. I underwent an umbilical cord blood transplant as a part of my acute myeloid leukemia (AML) treatment. Here are five things I wish I would have known before checking in.

1. Bring walking shoes.
You've heard this thousands of times: You'll walk a lot with the nurses. This is no exaggeration.

Each time you complete a lap, you'll get some sort of paper recognition from a nurse.
Display these tokens on your door.

Many times when I felt too tired or sick to walk, I looked at my door and saw what I had already accomplished. This helped me feel better, either by reminding me of my strength or reassuring me that it was OK to take a day off. Plus, the signs on your door may help motivate other patients.

mginley21314.jpgBy Mary Ginley

When I was diagnosed with esophageal cancer, I was stunned.
 
Then came the questions. Usually, the middle of the night is when I find myself thinking about this cancer and why it happened.  It's not, "Why me?" Not at all. It's more, "What did I do or not do that caused this?"

I remember talking to a friend who was diagnosed with breast cancer. She was really beating herself up about it. She lamented that she hadn't eaten healthier food, that she hadn't exercised more or stayed away from stress, or slept for eight hours each night.

And I (wisely) said, "It's not your fault.  It just happened.  Or if there were things that contributed to it, that was then, and this is now. Forget it. What you do from here on is all that matters."

Wondering what caused my esophageal cancer
This is my second cancer diagnosis, and I can't help but remember that old saying:" Cheat me once, shame on you. Cheat me twice, shame on me. "

neumann21113.jpgBy Gerard Neumann

It started with inspiration from my daughter Emily. Starting her senior year of college, Emily knew she needed to lose a more than a few pounds. Her health was at risk. She decided to modify her diet and run in a half marathon. She had four months to get ready.

In a show of support, her four siblings, none of whom had ever run a half marathon, decided to join her. I watched with amazement as all five actually finished the race in December 2012. "I could never do that," I thought to myself. My stem cell transplant from my acute myeloid leukemia (AML) treatment had only been two years prior. Running a half marathon seemed impossible.

However, in summer 2013, I was out for a four mile run with my youngest daughter, Mikaela, when we made a wrong turn and ended up running seven. "Maybe I could do a half," I thought.

Training for a race after cancer treatment
That started the training. Mikaela and I spent most early summer mornings up on the road. By the time October came, I could run 10 miles. Originally, my intent was just to run the half with my children in College Station, Texas that December. I got antsy and decided to run by myself in El Paso at the end of October. I managed a decent time (for a 57-year-old) of two hours and 25 minutes. I had done it.

marlaavery1.jpgJust seven weeks after she gave birth to a baby girl, Marla Avery's cancer returned.

A year earlier, Marla had lost her eye to uveal melanoma, a type of melanoma that impacts the eye. Though she'd had to have her eye removed and replaced with an artificial eye, Marla thought this was a small price to pay for survival.

But now her cancer was back, and this time it had metastasized in her liver.
 
"All I could think was I don't want to die. I have a beautiful life, and it took a long time to get here. I don't want to die," she says.

Marla's uveal melanoma metastasis treatment
Under the care of Wen-Jen Hwu, M.D., Ph.D., Marla enrolled in a clinical trial at MD Anderson for her uveal melanoma metastasis.

The doctors explained the treatment plan. They would perform a surgery while Marla was awake to attach a catheter to her liver that would bring the chemotherapy drugs to the cancerous regions on her liver. They knew that they could not reach one of the regions because of its location, but they planned to focus on the other two.

Harley.jpgBy Harley Hudson

Leukemia is a strange disease. As I observe people in the Leukemia Center waiting rooms, I'm hard pressed to know who is the patient and who is the caregiver. With some exceptions, we don't look sick. Of course, there are the few who arrive in wheelchairs or have bald heads or wear head covers, but for the most part, we are a healthy looking bunch. The only way to pick us out of the crowd is to look for the ID wristband or the telltale colorful wrap indicating a recent blood draw.

As cancer patients, we have good days and bad days. The same goes for our looks, too. Some days you don't look great. Other days you look just fine. However, without the outward signs, people don't understand the battle we wage. It's not that we are seeking pity, but we need the support of our family and friends.

'We look healthy. We aren't'
People don't understand that we may be in a life and death struggle.

I had some friends who refused to get the flu shot -- ever. What they don't understand is that even if I take the flu shot, I still have about a 30% chance that I will get the illness.

anna jackson 2.5.14.jpgBy Anna Jackson

In January 2013, I was diagnosed with stage IV invasive thymoma. Never heard of it? Don't feel bad, no one else I know has either. In fact, MD Anderson sees only about 25 cases a year. It's a rare cancer that starts in the thymus, a gland located in your chest between your lungs.

It's pretty scary to have something so few people have experienced. I remember so clearly my doctor in Lubbock giving me my diagnosis and talking through the treatments.

"You will need chemotherapy to treat your cancer," he told me. "We're sorry, but its thymoma. It's rare, and there's no one in this area who's ever had it."

Look at all those words. Chemo, cancer, thymoma, rare, no one. Can you feel the weight of them? I recognized a shift in my body as soon as the words crossed my mind.

Either I had to take control of my thoughts, or they would take control of me.

Taking control of my cancer journey
Next came the hard part: How? I began by reworking my vocabulary and God began reworking my mind.

I do not claim "cancer." Instead, I have renamed it "The Nuisance." It's something that I have to deal with so I can continue on my journey.

kyssi1.30.jpgKhyrstin Andrews, better known as Kyssi, is usually late for her doctor's appointments. The 5-year-old cancer survivor is a bit of a celebrity, and she's often stopped by other MD Anderson patients who want to meet her or pose for a picture. Her positive perspective and unique style have inspired thousands who face similar journeys.

Kyssi's Wilm's Tumor and lung cancer journey
Kyssi was diagnosed with a Wilm's tumor May 1, 2012. After undergoing chemotherapy and radiation, she rang the bell and entered remission. But not long after that, her Wilm's Tumor returned with metastasis to her lungs. Doctors said she had a 30% chance of survival.

Armed with a contagious smile and an ever-growing Hello Kitty clothing collection, Kyssi stayed strong through her lung cancer treatments: a surgery, frequent hospitalization  and after her first chemotherapy didn't shrink the cancer, another nine rounds of an intense type of chemo commonly referred to as ICE. ICE is named for the initials of the drugs used: ifosfamide, carboplatin and etoposide.

nurse with patient.jpgPreparing for chemotherapy may cause you anxiety, but talking to fellow cancer survivors can help. 

We asked our Facebook community for advice on preparing to start chemo during cancer treatment. Here's what our patients suggested:

Pack a bag.

  • Bring warm clothing layers in case you get cold. Pack jackets, sweatshirts, scarves and warm socks. At MD Anderson, we have blankets available for all patients and a bed or recliner available depending on what type of chemotherapy you'll receive.
  • Bring something to do. Patients recommend books, laptop computers or tablets. We provide television and Internet access for our patients. Many patients also suggest listening to music that makes you feel good.
  • Include healthy snacks or chewing gum.

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For Terry Arnold, the decision to undergo genetic testing was simple. A triple-negative inflammatory breast cancer survivor, she wanted her children to have the warning she never had.

"By having this testing I'm protecting my family," Terry says. "Now, we have the smoke alarm."

Terry is a mother of five -- three girls and two boys -- ranging in ages from 19 to 31, and a grandmother of five. Genetic testing for the BRCA gene could let those future generations know if they are at risk for breast and ovarian cancers. 

She received the results in November 2013.

"Mutated gene 5385insc-BRCA 1," the report said. That meant her children could have the gene as well.

Facing new questions after genetic testing
Terry's daughters plan to undergo genetic testing soon. Her sons are considering testing to see if they carry the gene. 

At 24-years-old, Terry's daughter Veronica says her mom's results have inspired her to schedule mammograms and cancer screenings.

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