On September 25, an unprecedented fundraising campaign will be launched. Stand Up to Cancer is a charitable group organized by Entertainment Industry Foundation. Uniting dozens of organizations, large and small, and anchored by a TV special that will air simultaneously on ABC, NBC, and CBS, Stand Up to Cancer is aiming to raise enough money to fund so-called “Dream Teams” of translational researchers who are poised to create the next generation of cancer treatments.
Although this sounds like a massive event, like all worthwhile causes, Stand Up to Cancer relies on real people. People like Ben Teller, an 18-year old diagnosed with Hodgkin’s Lymphoma who chose to “make cancer his b*tch”, who chose not to give in to despair, and who chose to inspire his friends and neighbors (and maybe you) to stand up and fight back.
Sunday, August 24, 2008
Standing Up to Cancer
Saturday, August 23, 2008
The Right Move
Several times in the past I have blogged about newpaper articles featuring my patients. Now I’m going to blog about a newspaper article/blog post written by one of my patient’s parents. So often, our focus is on the children who are being treated, and that is only appropriate. But childhood cancer affects the entire family, even when the “child” is 20 and a college student.
I have a patient who was referred to me by one of my colleagues who used to be one of my trainees. His mother writes for a local newspaper. Her farewell column deals, in part, with what it’s like to be the parent of a kid with cancer. I loved what she had to say. Please go take a look!
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Another Patient Makes News
One of my patients is famous!
Make A Wish
Wednesday, August 20, 2008
Camp Sunrise 2008
Earlier this month I had the opportunity to be “Camp Doctor” at Camp Sunrise 2008. What an experience that was!
What is Camp Sunrise? Camp Sunrise is a week-long sleepaway camp for kids with cancer, sponsored by the American Cancer Society. Every year the ACS helps rent a campground, and the doctors and nurses from Hopkins and University of Maryland provide medical staffing so that kids can go, even if they are undergoing active treatment. We can give IV fluid, antibiotics, and even chemotherapy at camp.
One of the best parts of camp is seeing my patients outside of clinic. No matter how informal I try to be with my patients, when they come to clinic they are just that – patients. But at camp, they’re kids. They run and jump and play and fall and skin their knees and do “kid stuff.” Like tie dying shirts. Or playing volleyball. Or performing in a skit. Just follow this link to the official Camp Sunrise website to see some wonderful pictures from previous years.
I also love catching up with patients I haven’t seen in a while. In the middle of the morning, I was standing near the dining hall and talking to an old patient, when all of a sudden someone crept up behind me and scooped me off my feet.
The young man holding me as if I were a rag doll was a patient of mine when I was a first year fellow, back in 1997. Obviously the chemotherapy didn’t stunt his growth! I remember him when he was 8 and his only passion was video games (he beat me repeatedly). Now he’s starting his senior year of high school and planning on college next fall. What a joy it’s been watching him grow up! Literally.
We also had our share of adventures that day at camp. Around 4 pm, the skies opened up and we were treated to a tremendous thunderstorm. Now, ordinarily, I LOVE thunderstorms, especially when I’m outdoors. But Camp Sunrise this year had only 1 road leading in and out. And lightning struck a tree. And the tree fell across that one road. And all of a sudden I was the only doctor in a camp full of kids with cancer that was cut off from the rest of the world. When the tree fell, it took a power line with it, so we also suddenly lost electricity. Evening medicines were distributed by flashlight. They had to hook up a generator to power the refrigerator that kept our medications cold.
Then a kid came to the Funny Farm (our infirmary) with a fever. That was pretty nerve-wracking, because a fever can be the first sign of a life threatening infection in our patients. Fortunately the young man was one of our long term survivors and just had a cold. Everyone was relieved when word reached camp that the fallen tree had been cleared and the road opened before anything really bad happened.
Despite the storm, my day at Camp Sunrise was amazing. I can’t wait to go back next year!
Related Posts:
Summer Camps for Children with Cancer
Tuesday, August 12, 2008
Cancer and the Olympic Games
Just like other people, athletes can get cancer, too.
Everyone knows about Lance Armstrong’s amazing feats after beating testicular cancer. Most hockey fans remember Mario Lemieux returning from treatment for Hodgkin’s Disease to lead the Pittsburgh Penguins to the Conference Finals. Baseball fans from my home town (Baltimore) probably remember Eric Davis being treated for colon cancer while playing for the Orioles.
This year’s Olympic Games has a similar story. On June 19, one week before he was scheduled to leave for the US Olympic trials in Nebraska, Eric Shanteau was diagnosed with testicular cancer. His doctor cleared him to go to the trials anyway.
Shanteau wasn’t given much of a chance to make the team, but when Brendan Hansen faded on the last lap, Shanteau passed him, came in second, and secured a spot on the team. That’s when he had to face the difficult decision of whether to go to Beijing and compete, or get his cancer treated without delay.
His primary oncologist recommended immediate treatment, even though that would have kept him from going to the Olympics. Shanteau sought out other opinions, and decided to have weekly blood tests and go to the games.
Controversial as his decision was, his teammates rallied behind him and been inspired by his courage. "It's been quite inspiring in many ways," backstroke world record holder Aaron Peirsol said at a team press conference last week. "The way he's handled this, you step back and realize there's more to all this than just swimming."
As an oncologist, I have mixed feelings about this decision.
On the one hand, Shanteau is an adult and can make his own decisions, prioritizing his Olympic dreams above all else. Elite athletes make decisions like that all the time. And he’s lucky, because testicular cancer is something that can be followed easily with blood tests. A rise in the blood test would indicate the disease is progressing, and Shanteau has said if that happens he’ll go back home and start his treatment. Also, his ability to compete in such a high pressure environment while he has cancer is incredibly inspirational, especially to people who might otherwise think life ends when cancer begins.
On the other hand, the oncologist in me worries that this young man may be prioritizing his career over his health. Then again, if caught early, testicular cancer is very curable. In fact, the cure rate for localized disease is over 90%. The cure rate is good for widely metastatic disease too, but his chances of survival are not nearly as good if his disease spreads before he begins treatment. Is Shanteau sacrificing his chance at long term survival just for a swim meet?
He’s an adult. He can decide where his priorities lie. And regardless of whether this was a good decision, Eric Shanteau’s story remains an inspiration to us all.
Monday, August 11, 2008
Make A Wish
Being diagnosed with cancer is horrible. Being a kid with cancer is especially terrible, because this is a disease that robs kids of their childhood. Either because of the disease itself, the treatments, or side effects, children with cancer spend a lot of time in the hospital, become isolated from their peers, and even when they are treated successfully they often never fully recover.
Siblings are also affected by a cancer diagnosis. Parents shift focus toward their sick child, sometimes at the expense of the other kids. Some children donate bone marrow, which is not without its own risks. Childhood cancer truly affects the entire family.
One foundation that tries to make this a little bit better is the Make-A-Wish Foundation. This is a group that raises money to grant a single wish to any child with a life limiting diagnosis. The work they do is tremendous, and the smiles they bring to the faces of our children are priceless.
An article in a local paper tells the story of my patient Aaron and his fight with leukemia when he was an infant. Just last week, Aaron’s wish was granted – two local contractors designed and installed a customized playset in the family’s back yard. The joy in the faces of Aaron and his siblings says all that needs to be said.
Related Posts:
Cancer and Self-Image
When the Routine is Anything But
The Story of K
Saturday, August 9, 2008
Johns Hopkins Team Sarcoma 2008
Our group met on the morning of July 12 at a local mall, and we wheeled down the Baltimore and Annapolis Trail. My colleagues Dr. Kristy Weber (orthopedics) and Dr. Katie Thornton (medical oncology) were there, along with 50 participants.
We had young people as well as adults. We had bicycles and rollerblades and walkers.
Our research nurse, Margaret Fogle, did a great job marking the trail with both instructions and inspirational messages.
All of the participants left with a smile and a Sarcoma Knows No Borders bracelet.
Everyone is eager for an even bigger event next year!
Thursday, July 24, 2008
When Chemo Works
Recently, I blogged about a patient with a tumor that was difficult to diagnose. A day or two after that post, the pathologist told me the diagnosis: myoepithelial carcinoma. You can follow this link to the article that describes the largest group of patients with this diagnosis: 29. That paper brought the total number of such cases reported EVER up to 73. To put that in perspective, this is the number of women who are diagnosed with breast cancer in the US every 3 hours. To say that this diagnosis is vanishingly rare would be a tremendous understatement.
So how does one go about deciding how to treat something so rare? We reviewed all 73 case reports, and unfortunately almost none of them included any details about what chemotherapy was used. There was one exception, though. This paper describes a woman with this diagnosis who had a great response to the combination of carboplatin, taxol, and gemcitabine. Based on her experience, we offered a similar treatment regimen to my patient (and his mother, since he is a teenager). They agreed, and we all hoped for the best as the treatment started.
The main point of my prior post was how ironic it was that I was hoping the patient’s tumor was malignant, because that might make it easier to treat. Here is the patient’s CT scan the day we started his chemo and his scan from earlier this week.
You don’t need to be a radiologist to see how much the tumor shrank after just one cycle of chemotherapy.
Certainly this patient has a long way to go, and he still has more chemotherapy, radiation, and surgery in his future. But this tumor is going to be so much easier to deal with now that we know how sensitive it is to chemotherapy. Benign tumors never shrink like this after a cycle of chemo.
His outlook is very good. Sometimes malignant IS better than benign!
Tuesday, July 22, 2008
The Joy of...
Living!
I learn so many lessons from my patients. Some of them are medical, but the more important ones are general life lessons.
His medical problems have not kept him down, though. He went to his prom this past spring with a beautiful young woman. He and his father have been hunting in Alaska twice this year. He has spent the summer boating and swimming on a lake in upstate New York. This picture was taken while he was skydiving this past weekend. His father tells me that this is a look of pure joy.
Clearly, having a life-threatening diagnosis does not mean your life has to end. There is still joy to be had in living!
Thursday, July 17, 2008
Cancer and Self-Image
Cancer and its treatment cause big changes in how patients look. Sometimes a tumor is visible and directly alters the patient’s appearance. Some cancer surgeries are disfiguring. Chemotherapy causes hair loss. Chronic steroid use can change the way a patient’s face looks. Cyclosporine, used to prevent and treat graft-versus-host disease, causes hair growth in unusual places.
These changes can be even more profound when the patient is a child. Radiation causes bones to stop growing, so as the rest of the child grows, the irradiated bones do not, and scoliosis or other changes can develop. Chronic steroid use impairs growth. Bone marrow transplantation and brain radiation cause significant hormonal changes whose importance is magnified in the developing child or adolescent.
Adolescence is a time when appearance is terribly important and often central to a person’s developing self-image. Imagine, then, how hard it can be to be diagnosed with cancer and then be treated for it when you’re that age – when all you want to do is fit in!
What can be done about this? One important source of help is people who have been through it before. One woman, Marianne Kelly, started a program in Baltimore called Image Recovery Centers. Ms. Kelly was diagnosed with a brain tumor in 1987, and that experience, along with the experience of losing a sibling to leukemia and having a daughter diagnosed with leukemia, led her to work with cancer patients to help them maintain a positive self-image despite the changes caused by their diagnosis and the treatments they need. I send my patients to the Image Recovery Center at our hospital as often as I can.
Another source of support can be the stories of patients who cope particularly well with the effects of their cancer treatment. My patient M, for example, dyed her hair purple (and sometimes pink or blue) as it grew back after she lost it during chemotherapy.
My favorite story, though, is about Warren (not his real name). Warren was 9 when he was diagnosed with retinoblastoma, cancer arising in the back of the eye. Most retinoblastoma patients are infants, and Warren is the oldest retinoblastoma patient I have ever cared for. When he was diagnosed, his tumor was so advanced that there was no hope of saving the vision in his right eye, so it was removed, a procedure known as “enucleation.” After healing from the surgery, Warren received a prosthetic eye. The prosthesis was so real looking, that one of my colleagues had to ask Warren which eye he had lost!
Photo CreditBut the best part of the story is not the quality of his glass eye, but what Warren did with it. The first summer he had the eye, he spent a lot of time swimming in his pool. While other kids in the neighborhood would toss a penny into the pool to dive after it, what did Warren and his friends dive for? You guessed it – his eye!
How’s THAT for making the best of what life gives you?
(Follow this link to see how easy it is to remove a prosthetic eye)
For more information about coping with the effects of cancer treatment, click here for beauty and comfort tips from the Image Recovery Center at Johns Hopkins.
Related posts:
The Story of D
One of My Patients is Famous
Monday, July 7, 2008
Johns Hopkins Team Sarcoma
Team Sarcoma 2008 is an international initiative to raise sarcoma awareness. Next week, 30 medical centers and dozens of advocacy and patient groups will be holding events in 12 countries as part of the Team Sarcoma Initiative. Organized by the Liddy Shriver Sarcoma Initiative, this annual event has grown from a single event in 2003 to a multi-national event involving more than 5,000 participants this year.
Johns Hopkins will be hosting a Team Sarcoma event on Saturday, July 12. Entitled “All Wheels Welcome,” we will be biking, blading, and even wheelchairing along the Baltimore-Annapolis Trail from 9:00 am until 12:00 noon.
If you’re in the area and want to join us, email me and I’ll get you the details. The event is free (we just want to raise awareness), but we’d like to have some idea of how many people are coming.
Related Posts:
Sarcoma Video
The Importance of Research Foundations
