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BY GUEST BLOGGER | MAY 1, 2012
To paraphrase Winston Churchill, "This is not the end, but it is certainly the beginning of the end." I firmly believe that 2012 could be remembered as the year that changes the course of lung cancer given the efforts under way by patient advocates and medical leaders to bring responsible, safe and effective early detection to the at risk public.
In addition, by bringing best practices in a continuum of care linking prevention, early detection and treatment, we will stimulate more research and new approaches to identifying those at risk, preventing and treating lung cancer, more effective smoking cessation protocols and a better understanding of other causes of lung cancer.
Last February Lung Cancer Alliance has launched first of a kind "The National Framework for Excellence in Lung Cancer Screening and Continuum of Care," guidance for both consumers at risk as well as sites offering care.
The National Framework presents in three parts. First, it advises the public on their rights--starting with the right to know if someone is at risk for lung cancer. Risk factors include smoking history; family history of lung cancer; environmental exposures to radon, secondhand smoke, asbestos and other known carcinogens; exposure to battlefield fuels; history of other lung diseases. If someone has one or more of these risk factors, they need to talk to their doctor about screening with a low dose CT scan.
Second, the National Framework lays out guiding principles of screening and the continuum of care for screening sites. LCA contacts each one to ascertain that they are a multi-disciplinary team and that they follow a coordinated continuum of care for screening, diagnosis and disease management that complies with comprehensive standards based on best published practices. Once identified, LCA lists these sites and alerts the public on www.screenforlungcancer.org.
Third, the National Framework establishes the Lung Cancer Screening Excellence Forum. This Forum will be comprised of leading medical and health professionals as well as industry and insurance representatives. The Forum is a mechanism for the discussion of how best to collect data on outcomes, analyze the data and build feedback improvements into the system of care. If tissue, blood, breath and urine samples are collected during the screening process, biomedical research into all types of lung cancer, precancerous conditions and improved treatments can be accelerated and better coordinated.
The time has come for lung cancer screening and its continuum of care to be embraced. It is a matter of life or death. If we move swiftly and responsibly we can reduce lung cancer mortality by half by 2020.
Laurie Fenton Ambrose
President & CEO
Lung Cancer Alliance
Lungcanceralliance.org
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BY GUEST BLOGGER | APRIL 12, 2012
CURE invited Dennis M. Abbott, DDS, founder and CEO of Dental Oncology Professionals of North Texas, to explain the risks and management of dry mouth during cancer treatment.
"Sometimes my mouth gets so dry that I wake up with my tongue stuck to the roof of my mouth. It's been so bad that I've had to get a drink of water to get it unstuck!" - B.D., Mesquite, TX
Dry mouth. Xerostomia. Hyposalivation. Cotton mouth. Call it what you will...but very few people really understand what a severely dry mouth is all about better than someone battling cancer.
Dry mouth is a common unwanted companion for many oncology treatments. For patients undergoing chemotherapy, xerostomia is a pharmacological side effect of the cytotoxic drugs used to combat the cancer. In head and neck radiation therapy, hyposalivation is a direct effect of ionizing radiation administration on the salivary glands. At best, dry mouth is annoying; but in severe cases, the potential effects of xerostomia on teeth and soft tissues of the mouth can be devastating for years.
The story begins with spit, or saliva. Under normal conditions, the average human produces about one liter of saliva per day. Saliva functions as a protector of the oral cavity. It keeps the tissue moist. It neutralizes the acidic by-products of intraoral bacteria. It begins the digestion process, by moistening what we eat and breaking down starchy foods. It lubricates the moving parts of the mouth allowing us to smile and speak. In short, saliva is a big deal...and it is greatly missed when it's gone!
A loss of saliva can lead to a host of problems: difficulty chewing or swallowing; changes in taste; nutritional compromise; intolerance to oral medications, such as pills and capsules; increased susceptibility to dental decay; higher risk for oral infections; increased likelihood of injury to oral tissues; and an inability to wear dentures or partials.
Often, patients find the consequences of dry mouth annoying; while sometimes, they can be devastating. Some may even become emotionally depressed after not being able to carry on with what had previously been daily routine activities such as eating and tasting food.
From a dental health perspective, severe dry mouth can be very damaging to the teeth and increase the risk of intraoral infections. Teeth in a dry mouth are especially susceptible to decay at the gum line. A cavity at this location can be especially problematic since decay does not have to travel far to infect the center of the tooth, leading to a dental abscess. Likewise, a patient with diminished saliva has an increased risk for intraoral bacterial, viral or fungal infections that can become a systemic health problem if the patient has mouth sores, as in mucositis.
The solution comes by first identifying the problem. Like many areas in medicine, there are several ways to manage dry mouth. A dental oncologist, a dentist that specializes in oral medicine as it relates to cancer care, can help decide which is right. Treatment can range from systemic medication to mouth rinses or topically applied intraoral gels. A neutral rinse can be made by combining 1/4 teaspoon salt, 1/4 teaspoon baking soda and 1 quart water. This simple mouth rinse can be used to moisturize the mouth by following the directions to swish and spit. Again, a dental oncologist can determine which method of management is best for you.
Fluoride is an essential element for management of dry mouth. Carrier trays for localized delivery of fluoride make it possible to get the tooth-strengthening gel right where it needs to be. Patients with dry mouth must commit to meticulous oral hygiene including brushing and flossing two to three times a day, regular use of prescription-strength fluoride, and professional dental cleanings at least once every three months. When dental restorations are required, the dentist can even choose a fluoridecontaining filling material.
Food choices often change when dry mouth is a factor. Frequent consumption of highly acidic foods should be avoided as this can be harmful to tooth enamel and increase the risk of decay. Foods that are high in sugar and sticky foods must also be controlled. When these foods are enjoyed, a proper dental hygiene regimen should immediately follow to minimize the time these damaging foods have contact with the teeth.
Understanding the risk and seeing dry mouth as more than just an inconvenience is a big part of the battle. Knowing there are healthcare professionals who understand the struggle and can help manage not only the xerostomia but also the treat any infection or pain that might arise should encourage patients facing dry mouth to ask questions and seek help. So, when spit doesn't happen...call your dentist or dental oncologist.
Dennis M. Abbott, DDS, is the founder and CEO of Dental Oncology Professionals of North Texas, an oral medicine practice dedicated to meeting the unique dental and oral health needs of patients battling cancer. In addition to private practice, he is a member of the dental oncology medical staff at Baylor Charles A. Sammons Cancer Center and Baylor University Medical Center in Dallas. Dr. Abbott has conducted studies focusing on bisphosphonate-related osteonecrosis of the jaw and xerostomia in patients with cancer.
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BY GUEST BLOGGER | MARCH 22, 2012
I went skinny dipping last month. That might not seem worthy of a news flash, but the fact that I uncovered my post-lumpectomy chest in front of people who were not medical professionals is groundbreaking.
I used to be comfortable in my skin, but getting diagnosed with breast cancer at the age of 32 changed that. Multiple surgeries left me with angry scars and an altered shape, while radiation made me unable to tolerate underwire. Clothes that used to fit no longer did. Compliments my husband paid no longer rang true to me, though I never doubted his kind intentions. And situations that were once routine--wearing form-fitting clothes, shopping for a bathing suit, changing in front of a friend--now made me self-conscious.
I knew I was lucky to be alive, but I wished I didn't have to trade in my confidence to regain my health.
No one welcomes the makeovers cancer provides, but young survivors can have an especially hard time adjusting to these abrupt changes. We enter treatment at the peak of physical fitness, and we are shocked to discover our bodies may never look or feel the same.
Page Tolbert, a former oncology social worker at Memorial Sloan-Kettering, says the physical alterations can trigger emotional ones as well. "Every single time that I have been in a room with young cancer survivors--every single time, I can't think of an exception--I hear two words: damaged goods," explains the middle-aged Tolbert. "At my age, everyone feels like damaged goods. But to be young and feel as if you are not all that you should be or that pieces of you will never be back in place, it is a terrible feeling."
Now we attract a kind of attention we never wanted. One survivor I know had three surgeries to treat testicular cancer, and now he has 24 inches of scar tissue lining his torso. "When I go to the beach, I look like Frankenstein," he said. "I went to a bachelor party at the beach. I didn't want people to think: 'Poor Dave, he had cancer.' I just wanted to be one of the guys hanging out. I was able to drink enough beer to get past it."
Even when we aren't pulling off our shirts, we still think people can see the harm done by cancer. My friend Kathleen was 38 when she had a mastectomy and reconstruction with a saline implant, and now she constantly questions whether people notice the difference. "I was in yoga class this morning, and one boob is sagging to the side and one is standing up. I can't help think, 'Can everyone else tell?'"
It's especially painful when we feel damaged in places that contribute to our sense of masculinity or femininity. Alex got diagnosed with testicular cancer in his early thirties. He had one testicle removed and decided not to get a prosthetic because he didn't want to undergo another complicated procedure. But two years later, he thought a prosthetic might have helped with self-esteem, "which took a hit," he says. "It is emasculating. It makes you feel less like a man. I still have issues with that in terms of self image."
Kathleen told me, "Now I look down at myself and see a weirdly put together nipple somebody tried their best to assemble from skin. My doctor said, 'To be honest, we can make you look good in a bra or bathing suit.' But you get naked with your husband, and I doubted him and his reaction. My husband would say 'It's great. You look wonderful. You are healthy. It's not what I focus on.' But I needed convincing."
Many of us need that kind of convincing. Some get it through the reassurances of loved ones. Some get it by hooking up with new partners. Some get it from a new appreciation for what our bodies can endure. Amee, who got breast cancer at 27 said, "You learn just how amazing your body is and that's its capable of more than you ever imagined."
For me it's been a matter of time. My scars don't upset me as much as they used to, because I feel safer in my prognosis. I have also seen how positive forces like childbirth have altered my body as well. While I haven't regained my pre-cancer élan, I do see more skinny dipping in my future.
Emily Cousins blogs about young survivor issues at Stupid Cancer Blog and Huffington Post. She is also writing a book called Back from Cancerland about life after cancer for people in their 20s and 30s.
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BY GUEST BLOGGER | MARCH 12, 2012
Fear can be one of cancer's most debilitating side effects. Sparing no patient, survivor or caregiver, it is also the most common. Medical professionals, faith and loved ones can help you manage anxiety. So can a colored pencil, bottle of glue or keyboard. Art therapy provides a mechanism for working through difficult emotions and reducing stress. Regardless of how well you can draw a stick figure or write a haiku, creative expression can bring you comfort.
Many young adult survivors have turned to art to restore their sense of optimism and passion for life. Chris Ayers, an artist working in Hollywood, began a project he calls, "The Daily Zoo" on the one-year anniversary of his acute myelogenous leukemia diagnosis at age 29. As part of his recovery process from a bone marrow transplant, he set the goal of drawing an animal a day for one year. The result: a published anthology of rhino plumbers, alien possums and much more called, The Daily Zoo: Keeping the Doctor at Bay with a Drawing a Day, which was followed by Volume II--a second year's installment of drawings. Will Reiser, screenwriter of 50/50, is another high-profile example of a young adult cancer survivor who used comedy to come to terms with his traumatic experience, as well as to move forward.
Creative expression as a healing mechanism does not require talent. The only prerequisite is the willingness to face your fears. There are many paths for exploring the complicated mess of emotions that cancer causes. Cancer blogs have become a common means of therapeutic expression, with readers able to offer encouragement via the comments function. YouTube and other video-sharing services provide another medium for expressing oneself.
Transformative writing is a powerful strategy, which I've been practicing since my diagnosis with acute myelogenous leukemia in April 2011. My blog is entitled, "Shelley's 'Life's a Beach' Blog." The Our Story page concludes with the thought: "As I wrote in my first post, life can be a b*tch, but we must always remember what a beautiful beach it is too." The first drafts of many of my entries were much darker than the final posts. By reworking my thoughts into a version that wouldn't terrify my family and friends, I lessened my own fear. Iterative writing can transform the worst of thoughts: "I'm going to die," into "I might die," into "I will survive."
Although blogs and video logs offer easy ways to share your efforts, the creation--not the publication--is the essence of therapeutic art. Social media, with all the benefits it provides to the cancer community through connecting people and informing, happens at a speed that may be too fast for inner reflection. There may be points in your healing process when you need to slow down and focus inward in order to develop ways to turn negative thoughts into positive ones. Chris Ayers draws his animals with paper and pencil as his only companions. Will Reiser sat alone in front of a screen, drafting his script, long before the cast was hired.
Although cancer can make us physically weak, we are still a subset of a generation filled with energy and hope, a generation that wishes to leave its mark on the world through creative expression. You can be part of that movement, regardless of age.
For those attending the OMG! Cancer Summit, the workshop, "Pen to ePaper: Self Expression in a Digital World" can jumpstart or boost your artistic efforts. Existing cancer blogs can be a source of inspiration, as well as provide a way to connect with others who share your circumstances. Additionally, below are a few "old school" exercises to try:
• Collage – Magazines can be a breezy, low-brain requirement for passing time during a hospital stay or chemo treatment. Tear out the images that speak to you and assemble them on a page. What does the resulting collection tell you about yourself?
• Smiley (or not-so-smiley) Faces – Draw five circles on a sheet of paper. Fill in the facial features throughout the span of a day or week, when you're in different moods. Try to be metaphorical: If you're grumpy, turn the circle into a bear or a man with a stick up his... Allow yourself to laugh at the results.
• Playing Dr. Dre – Combine lyrics from five songs to fit how you feel.
• Dear Cancer – I Had Cancer has a great page entitled "Dear Cancer." Users post their messages to cancer. Write a letter to cancer, and don't hold back.
Regardless of how you chose to express yourself, do so with abandon. Cancer doesn't restrain itself. Why hold back when coping with it?
Shelley Nolden is a mother, a wife, an investor relations professional and a writer. Shelley is currently in remission for acute promyelocytic leukemia (AML, subtype M-3) and receiving treatments to maintain that status. Like the rest of the cancer club, Shelley is trying to adjust to her new reality while keeping a positive mindset. Read more at www.shelleynolden.blogspot.com.
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BY GUEST BLOGGER | MARCH 5, 2012
Almost six years ago, a few months short of my 29th birthday, I was diagnosed with a rare pediatric cancer, Ewing's sarcoma. Yes, pediatric. So despite my age, I was treated in the children's ward, which certainly had its upsides. Anesthesia for procedures adults are usually expected to just grin and bear, like bone marrow aspirations. Posh accommodations with flat screen TVs and advanced screening DVDs of movies out in the theaters. The kids' menu.
The downside, of course, was that people my age were few and far between. I wasn't by any means the only adult pediatric patient (or geriatric ped as I like to say), but I was twice as old as the teen-aged patients who were the cohort closest to my age.
About a year after I finished chemo, the organization I'm Too Young For This! hit the headlines in The New York Times and Time magazine. I'd previously joined a young adult support group at Gilda's Club in Manhattan, but it was only three people and myself. But i[2]y, as it's abbreviated, was a gateway to a slew of young adult survivors in New York City, where I lived at the time and where the organization is based.
I attended some of their happy hours and their annual "Un-Gala" and even participated in discussions on next steps for the organization. It was invigorating to meet people my own age who'd been through the cancer machine. Or were still going through it.
At the end of this month, I'm attending i[2]y's 5th Annual OMG! Cancer Summit for Young Adults in Las Vegas. Despite the fact that the event has been held in New York City, or at least New York State, for most of the previous conferences I was never able to attend. But Vegas is incredibly motivating, as is the program of the conference, particularly the events surrounding the movie 50/50.
Seeing 50/50, in which a young man has a spinal tumor not unlike the one I had, was another turning point in my cancer recovery. At the OMG! Summit, the movie's writer, Will Reiser, who based the story on his own experience, will be honored and the film with have a midnight screening. It was moving to watch in the theater, but I anticipate that watching it surrounded by other YA survivors will be an entirely different experience. I think we won't be as afraid to laugh at the funny bits because we get that it's not all doom and gloom. (When I saw it in the theater with a lay audience, I noticed that the room got rather awkward when the movie took non-serious turns.) You have to take the humor where you can.
I'm also psyched to see old friends from i[2]y New York and my new i[2]y Boston family, as well as people I met a few summers ago at the survivor kayaking camp, First Descents. And then there are a handful of people I've been in touch with but never met. Like Jonny Imerman, founder of Imerman Angels, a foundation that matches survivors out of treatment with survivors in treatment of a similar age and diagnosis. I've twice been a mentor for Imerman Angels and corresponded with Jonny, but the times he's been in Boston (where I live now), I've been out of town and we've always wanted to connect.
Overall, the conference may be more social than clinical, and that's fine by me. We spend so much time getting poked and prodded and juiced up on chemo and blasted with radiation that some partying is in order. That's what survival is all about, right?
Su Ciampa has written for Jane and Salon.com. She recently completed work on No Clowns Please, a memoir about being an adult patient in a pediatric ward. Su also posts on the Stupid Cancer blog and will be attending this year's OMG! Cancer Summit at the end of March.
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BY GUEST BLOGGER | FEBRUARY 3, 2012
As my sister drove me to the hospital on a wintery night after my leukemia returned for the second time, I said over and over, "I'm never going to see my grandchildren. I'm never going to see my grandchildren."
I thought I was at the end of the line. I had already had three bone marrow transplants, each preceded by intensive chemotherapy, when my doctor told me that I had relapsed again.
On the night of Dec. 21, 2008, I had felt a little better after feeling sick for several days. My daughter and I were making cookies. Then I fell to the floor.
After she helped get me to bed, I took my temperature and discovered that I had a fever. I called Dr. Edwin Alyea, my physician at the Dana-Farber Cancer Institute, and he said he was sorry to tell me on the phone, but the pathology report on my latest bone marrow biopsy showed that I had relapsed.
He said he would understand if I didn't want to go through treatment again, but if I wanted to proceed, he had an idea for a new regimen.
I wanted to live. I wanted to see my three children, 16, 19 and 23, continue growing up into the wonderful adults I knew they would be.
I wanted to walk my Labrador retriever, play tennis, run a road race and return to my job as a newspaper reporter.
Dr. Alyea had said to go to the emergency room and get admitted, and then he would come see me and there would be a plan. It turns out I had pneumonia, so they had to treat that before they did anything else.
I was first diagnosed with acute myeloid leukemia in 2003 after feeling extremely tired while running a 10-kilometer road race near my home in South Hadley, Mass. Thinking I was probably anemic, not eating right or training poorly, I went to my internist. He said my blood counts were abnormal and sent me for a bone marrow biopsy. I soon learned that I had AML, a fast-moving cancer of the blood.
The "What, me?" response was pretty strong. I ate well and exercised, I didn't smoke and I was slender. But I had to accept it when, within about a week, I found myself in a bed at Boston's Brigham and Women's Hospital, about 90 miles from home. Under the care of doctors from Dana-Farber, I received three rounds of in-patient chemotherapy, with rest periods in between at home, and then my first bone marrow transplant.
It was an autologous transplant, meaning they used my own new, clean stem cells, removed after two rounds of chemotherapy and then returned to me in a rescue mission after a third and powerful round basically cleared out my bone marrow.
I was in remission, but my first Dana-Farber doctor, Daniel J. DeAngelo, told me that remission is not cure. He said that after two years you break out the Champagne, but only after five years can you use the word cure.
After two, then three-and-a-half years passed and normalcy wrapped its arms around me, I got another shock. The leukemia was back. I learned this just after I played in, and won, a doubles match at a tennis tournament.
"Leukemia is curable," DeAngelo said. "We'll get you back on your feet."
"I am on my feet," I thought to myself as I left his office. And then I burst into tears.
This time I would get an allogenic transplant, with stem cells coming from a donor. After the leukemia cells are killed by chemotherapy and healthy donor cells fill your bone marrow, the donor cells patrol your body to fight off any leukemia that might try to sneak back in.
But after six months, I learned a new term, graft failure: The donor cells had packed up and left, leaving my bone marrow almost empty. The cause was uncertain, and the donor was a good match who agreed to try again. After more chemotherapy, I had transplant No. 3.
Six months later, I had that second relapse.
There were so many things to worry about that a nurse who called me Nervous Nellie told me over and over, "Don't worry, they'll figure it out." And as you will see, the incredible doctors did just that.
I had a new donor and a new chemotherapy regimen consisting of three drugs. One of them, Atgam, is made from rabbit serum, and the nurses called it shake and bake, which is exactly what I did while I received it intravenously.
The transplant, on Jan. 31, 2009, went smoothly, but a few weeks later, I developed a severe blood infection, went into kidney failure and lapsed into a coma. One night, it was touch and go. My ex-husband brought my daughter and told my sons to come quickly and to bring their dark suits. Dr. Alyea met with them and said that there were many things wrong with me, but they would tackle them one by one.
And somehow I struggled to the surface, confused, scared and unable to speak. My legs were swollen like tree trunks, and I needed two nurses to turn me over. The nurses, who ranged from kind and gentle to kind and commanding, helped me pull through.
I regained my voice when a nurse nicknamed Big Red asked me, "What's my name?"
"Lisa," I answered in a grainy whisper.
"Say it loud!" she said.
It took all of my strength to say, "Lisa, Lisa, Lisa!"
But from then on I could speak.
After extended sessions of dialysis, my kidneys returned to normal. I was in bed for more than a month. When I got up, slowly and needing oxygen at first just to sit on the edge of the bed, I had to learn how to walk again. Total time in the hospital: three and a half months.
Recovery has been long and slow. Because you are like a baby with no immune system, during the first year you can't go into crowded places, and when you do go anywhere, you need to wear a mask and gloves. When I got back to walking, I was so wobbly I was like a Gumby doll. One day I fell over backwards, hitting my head on the pavement and earning a trip to the emergency room.
Two years after my transplant, I met my donor, Denise. Donors come from all over the world, but in an example of one degree of separation, Denise lives in New Jersey and is in a book group with one of my friends. Like all donors, she did an incredibly generous thing.
We hugged and grew teary as I thanked her multiple times and she thanked me for giving her a chance to save a life.
Now I am pretty much back to myself, despite graft-versus-host disease, a common complication after transplant in which the "graft" recognizes the "host" as foreign and attacks it. I don't have a bad case, but I do take big handfuls of pills and visit Dana-Farber for frequent check-ups.
I watched my daughter graduate from high school and go to college. I was at my middle son's college graduation and shared my older son's joy when he told me that he gave his wonderful girlfriend an engagement ring.
I rejoined my tennis team and, with my longtime doubles partner, won my first match back, an incredible thrill. I worked back up to running, which took a while, because when I first tried, my feet felt like they were made of lead. The Saturday after Thanksgiving this year, my son and I joined some 3,000 other runners in a scenic six-mile crossrace called the Talking Turkey.
I couldn't go back to work fulltime, but I have been doing freelance writing.
I am left with this question: How do you deal with it when you know that the same bus can hit you twice? You worry that all sorts of things – mainly fatigue - can signal a relapse. I talk to myself. "Maybe you're tired because you just played two hours of tennis." Oh, right.
The passage of time helps. So does hitting the ball on the sweet spot, or doing yoga, or feeling my feet hit the ground when I run, or sitting on the couch watching TV with whichever child is home, or watching the dog lie in the sun at my feet while I write or read. I laugh a lot. Sometimes when I roll over in bed, I flash back to when I couldn't do it myself, and I am so grateful to do that simple thing that I never would have thought about before.
I try to take it one step at a time, appreciating all that I have and looking forward to the good things.
Born and raised in New York, Ronni Gordon lives in South Hadley, Mass., where she raised her three children, Ben, 26; Joe, 22; and Katie, 19. She is a graduate of Vassar College with a master's degree in journalism from Boston University. She spent most of her career in daily journalism as a features writer at the Republican, in Springfield, Mass., and has been published in The New York Times, The Philadelphia Inquirer and elsewhere. She now spends her time freelancing, writing her blog (runnerwrites.blogspot.com) and working on her tennis game.
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BY GUEST BLOGGER | JANUARY 18, 2012
Silence like a cancer grows...and in this light, taking silence to task, Hannah, my 15-year old daughter and I presented an assembly this fall at her school on "The Face of Cancer." It was Hannah's tale to be told. I followed her lead. It was also the first time I really heard her full view of what she experienced during those initial calamitous days.
She has already launched the "Cancer Team" for students whose lives have been affected by cancer or who simply want to become involved in providing resources and support. She organized a walk for breast cancer for Baystate Health Foundation, Rays of Hope, bringing in nearly $4,550 with her classmates. There are now over 50 members and she is thinking of taking such an initiative national. I am sure she will. She was brave and courageous. Standing in the Chapel, before the entire school population of nearly 700 students, faculty and staff, she was proud and radiant.
We recognize that not everyone is comfortable with any of this. None of us really are. Many were moved. Some were a bit shaken. Cancer, or any disease, illness or trauma is a deeply personal, private matter. There are no "rules" for managing this sort of event. But we believe no good comes of silence when you are fighting something so deadly and devastating and if by raising the awareness and consciousness of those around us we can help demystify, encourage understanding and the need for more resources, including research and support, then all the better.
"Not everything that is faced can be changed. But nothing can be changed until it is faced."
-James Baldwin
November 7, 2011
Hannah Rose Green and Mark Richard Green
Morning Assembly
Nothfield Mount Hermon School, Mass.
Hannah: Good morning NMH. I am here today to introduce you to an amazing person, my dad. He is like me in a lot of ways; he has been my main role model since I can remember. He has a way of making friends with just a single sentence, maybe because he's always smiling, always optimistic, and constantly cracking jokes. He's also extremely active, and has more energy than any other middle aged man I've ever met. But he's not just my role model, he's also my best friend. I could never ask for a better father and friend.
Mark: There are moments in life that are completely out of our control. Some are minor disasters and others are of epic proportions. There is a particularly unstable glass shelf in our medicine cabinet, loaded with various items which from time to time comes loose, sending everything sliding and crashing to the sink below and you find yourself watching helplessly as the whole bathroom falls to pieces.
Hannah: This past summer, on a beautiful August day, the medicine cabinet fell. I came home from the pool to find my dad very sick. His eyes wouldn't focus, his speech was slurred and slow, and he couldn't walk straight. I knew something definitely was wrong when he didn't touch his dinner. He said he was having a migraine, and went to his room to sleep. A few hours later, he came to tell me he had just thrown up and that my step mom was going to take him to the hospital. "He just has heat exhaustion," my step mom assured me. She said that there was no reason for me to come, because they would probably end up waiting in the ER all night for him to get an IV stuck in his arm and sent home. So, I went to my mom's to get some sleep.
But I didn't sleep at all that at night, I was so worried about my dad. I waited all night for a text message from my step mom to tell me that my dad was fine. That message never came.
Mark: Once I arrived at the emergency room, I was given a CT scan and within 20 minutes the doctor delivered the news. I had a golf ball-size tumor and it was serious. What happened next was like riding on an awful carnival ride. The feeling of shock and bewilderment we will never forget. Was the Dr. kidding? Surely he was just kidding...
I was immediately transported by ambulance an hour north to Dartmouth Hitchcock Medical Hospital. All I recall was the muffled sounds, the darkness, the whir of the tires speeding up the highway.
Hannah: My mom delivered the news the next morning. She told me the doctors believed his illness could be attributed to something inside his head. I almost started laughing. Something in his head? I remembered a time when I was little, when my dad would stick pretzels in his nose to make me and my sister laugh. What'd he do, get pretzels lost in his brain? I thought. "Mom what are you talking about?" I asked.
She answered with a word that changed my life. A word I would hear a million times in the days to come, and a word I still think about every day, and will think about forever: "A tumor."
All I remember after that is uncontrollable crying, for hours, up until we drove up to the hospital to visit my dad, when my mom told me I needed to be strong for him. I was so scared to see him. It meant that the tumor was real and that I was not stuck in some crazy nightmare.
He was heavily medicated, because the tumor was putting pressure on his brain, causing him immense agony. He faded in and out of consciousness. When he was awake, he would vomit, cry, and ramble drunkenly about rainbows and unicorns. When he was asleep, he would curl into a crumpled ball, pale and weak.
Mark: I was stuck in a car crash which never seemed to end. I awoke, groggily, to a cacophonous riot of hospital machines, telephones, pagers, and people speaking softly and sometimes loudly, bright lights, a blur of sound and movement, and most painfully, the look of shock, fear and worry washing over my family. All I could do was think of my two daughters. I didn't want to die. Not now. I'm not ready, I thought. The pressure on my brain was expanding. I was told later I had less than a week to live before the tumor, with no room left to expand, would have herniated into my brain stem, killing me instantly.
The tears welling up in Hannah's eyes as she looked on with confusion and fear were the most devastating. I thought of Libby, away at camp, not knowing any of this. "What was happening to my dad?" Hannah seemed to be saying without even speaking.
Hannah: In the 10 hours I spent at the hospital that day, I watched my dad decline from bad to worse. He needed more medication every hour, woke up less, and became paler, more delirious, and more uncomfortable. The only part of his body that had any color was his neck, where the bleeding from his brain was pooling. I understood then that if that tumor was not removed as soon as possible, my dad would not be alive much longer. The surgery was moved to the next morning. Saying goodbye was the hardest. I begged to sleep at the hospital, but neither the doctors nor my family would allow it. I was positive that if I left, it would be the last kiss goodnight I would ever share with my father.
Mark: But, I did make it through the night, and at 6 the next morning my skull was opened up, the tumor removed, titanium screws and plates inserted, and sewn back up.
Hannah: His surgery finished with no complications, and I was rushed into the recovery room to visit him. My dad was awake and ready to party. He was cracking jokes to the staff, and to the other patients, trying to make friends and have fun.
I remember this as one of the happiest moments of my life. The trials of the past day were over, and my dad and my life were both almost back to normal. Until, a few hours later, when the doctor returned with the diagnosis of the tumor.
Mark: Stage 3 brain cancer. Anaplastic ependymoma, to be specific. An already rare cancer, it occurs over 95 percent of the time in children. Not much information for the doctors to work with. What the doctors do know is that the cancer is incurable and is a lifelong diagnosis. They said despite all efforts to radiate it, the tumor will eventually grow back, and could be operated on again, but not radiated again. There is no other treatment, save for experimental trials for which I will be eligible when the tumor returns. We didn't know when the tumor will come back. It could be in a year, it could be in 5, 10 years or more.
Hannah: The doctor hadn't even finished explaining before I was gone. I ran from the room, and cried on my mom's shoulder for a very long time. "He'll never see me graduate, never see me get a job, never walk me down the aisle, never meet his grandchildren." She didn't deny it like I wanted her to, but instead told me advice everyone should live by. "You can't live your life worrying about the future." It took me a long time to accept this, but it became easier when my dad returned home a few days later. He recovered quickly, and soon, his illness was almost forgotten.
Mark: Until several weeks later, I had a second brain surgery to remove the remnants of the tumor. At the end of this week, I will complete 33 treatments of radiation therapy to kill what they can of the cancerous tissue which remains. I will have, for the rest of my life, to monitor things with tests and MRI's. It is the emotional mountains which appear to be the steepest. Cancer is a sinister disease and will now always be lurking within.
Hannah: I was already back at NMH when my dad had the second surgery, and I felt enormous guilt for not being at home to support him. But I quickly realized that I was not alone. My story is one in over 11.7 million. The story I just told happens every day to countless families around the globe every day. In the time I've been talking, 4 people have died in US because of Cancer. And I can guarantee that every single person in this room will be affected by cancer at some point in their lifetime. And maybe some of you already have been.
This was my inspiration to start the Cancer Support Team. To support kids on campus who have been affected by cancer, and also to support cancer patients in every way we can. The cancer team has already raised almost $5,000 dollars for cancer, and this past weekend participated in a cancer walk in Greenfield.
There are a number of ways you can get involved in fighting cancer, and helping prevent any more of these stories from happening. Whether you want to commit to joining the 50 of us who are part of the cancer team, or make it a 1-time thing, there is a force in numbers.
This month, we will be selling t-shirts and also holding a haircutting event if you would like to donate your hair to cancer or even shave your head to show your support.
As most of you are aware, this month was breast cancer month. But tomorrow is the first day of November; I would like to bring attention to the most fatal cancer, lung cancer. The lung cancer color is white. Please show your support by participating in an all school white out. Thank you."
"In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life
In these bodies we will live, in these bodies we will die
Where you invest your love, you invest your life"
– Awake My Soul, Mumford and Sons
Mark R. Green, 44, lives in the small New England village of Walpole, NH with his two daughters and partner Barb as well as Aiden, the floppy standard poodle, and Molly, the diminutive but fierce Yorkshire Terrier. His sister is an editor for the National Comprehensive Cancer Network.
He was diagnosed last year with stage 3 anaplastic ependymoma brain cancer and underwent two surgeries and completed 33 radiation treatments on 11/11/11.
He counts among his many hobbies a love of music, food, literature, writing, bicycling, skiing, kayaking, fishing, canoeing, hiking and travel. His recent brain surgeries and stage 3 brain cancer diagnosis has given him additional energy to pursue with passion the need to raise awareness of all things brain cancer and cancer in general: from funding needs to helping those with few resources gain the tools they need to cope with what is surely an illness which upsets the balance of life itself. His blog is http://moosevt.wordpress.com.
[Mark Green with his daughters Hannah (left) and Elizabeth]
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BY GUEST BLOGGER | JANUARY 17, 2012
Waiting ... more waiting.
The cushion of silence envelops all those waiting in this room marred only by the intrusion of names called, the sound of pens on paper filling out forms, a low buzz from the vending machines. There is solace in the quiet, and as I look around I wonder about all of those who are sharing this room, seeking refuge in months-old magazines and the steady ticking of time; the hushed whisper of communication barely audible. Ronnie is knee deep into a magazine. I check the date. February, 2010. No wonder it looks faded.
What brings the others to this room? My mind wanders. I spend my waiting time trying to guess. For some, there is no question. Others aren't so clear. An older gentleman and his wife. Without the tell-tale bracelet I would have never known which was the patient. They aren't smiling nor are they talking. Is it cancer? Or some other malady? They are called back, and I'll never know. An entire family surrounds a young woman in a wheelchair with a cast that encompasses the length of her leg. Another family enters and breaks the silence. The kids bounce about and there is a fit of coughing. Happily, there is a young mom-to-be with her husband by her side. They are smiling, about to embark on a journey of their own that brings back a flood of joyous memories. Their wait will end and begin with miracles.
The waiting room is difficult for me today. Time is almost standing still. I'm ready to be done with this part of my day and to go home to normal. The normal for my family that is normal to no others and yet so many others. My name is finally called, and I begin to focus on my own reason for being here. Simple enough. Ronnie squeezes my hand. He can sense my mood without sharing a syllable. This has become routine - another normal - in so many ways. We have a balance, and he somehow knows when talking will bring me to tears and silence will provide unspoken comfort. So, true to form, he sits by my side and offers what brings me that peace: a shoulder to lean on, a hand to hold and the reassurance of knowing that he's beside me.
A stent replacement is no longer considered a battle. It's just a part of the journey. The list of what ifs that have forced me to sign on the bottom line barely make us blink. There is much more in the balance than what now seems like the improbable possibilities of a procedure like this. But for some reason I'm overly emotional. Will speaking my fears make them come true? Will whispering my hopes convince the world to share my optimism?
Somewhere, someday I'll discover why my mind doesn't always let me talk in a waiting room, even when I know that just writing the words or speaking them aloud won't change anything. Until then I will be thankful for that squeeze of the hand and be content with the quiet comfort of togetherness and the cushion of silence.
Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES, an organization for individuals living with metastatic liver tumors, and an advocate for C3: Colorectal Cancer Coalition.
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BY GUEST BLOGGER | JANUARY 6, 2012
CURE invited Diane Gambill, PhD, a CURE advisory board member, to share her thoughts on advancements in myeloma highlighted at the 2011 annual meeting of the American Society of Hematology.
I have blogged about the 'next generation' proteasome inhibitor carfilzomib and will likely have a chance to do so again as this interesting class of drugs expands. The proteasome inhibitors are a favorite of mine because they target a very interesting complex of proteins inside cells that was discovered in the 1990s. The proteasome helps the cell get rid of proteins that are made incorrectly or that get damaged once they are already made. Since myeloma cells grow rapidly and are actively making lots of proteins, they accumulate damaged proteins more quickly than normal cells. If cells cannot get rid of damaged proteins, they will die.
This explains, at least in part, why the proteasome inhibitor currently available in the clinic, Velcade (bortezomib), is effective in treating myeloma. Velcade and the immunomodulator Revlimid (lenalidomide) have become standard therapies for myeloma; unfortunately, not all myeloma cells are killed by standard treatments. Some myeloma cells are naturally resistant to treatment (referred to as treatment refractory) while others become resistant during treatment. Several studies are under way or completed that suggest carfilzomib might be active in myeloma that is refractory to treatment or becomes resistant during the course of treatment.
Two phase 2 trials have been conducted to study the efficacy of single-agent carfilzomib in treatment refractory or resistant myeloma. The PS0-171-003-A1 trial was reported at ASCO in 2011 [Proteasome inhibitors in myeloma: The next generation] and showed that 24% of patients who had previously received Velcade or Revlimid responded to carfilzomib. These responses were long lasting and there was a relatively low incidence of adverse events, including peripheral neuropathy (1% grade 3/4). Grade 3/4 peripheral neuropathy, which is considered moderate to severe neuropathy, occurs in about 8% of patients treated with Velcade for relapsed/refractory myeloma.
The second phase 2 trial with final results reported at ASH 2011, PX-171-004, showed similar results. This trial examined response to carfilzomib in patients who had relapsed or refractory disease but had not previously received Velcade. The response rates in this trial ranged from 42% to 52% depending on the dose of carfilzomib (20 mg/m2 or 27 mg/m2) with the higher response rate achieved with the higher dose. Responses were durable with a median time to disease progression of 8.3 months and 13.1 months at the low and high dose, respectively. This is an important result because the majority of patients had previously received an average of two prior therapies including Revlimid and/or stem cell transplant. The safety profile was similar to that seen in the PX-171-003-A1 trial.
One question frequently asked about carfilzomib is whether the decreased rate of adverse events is 'real.' In other words, do these statistics have any meaning for individual patients? The answer appears to be yes. A pooled analysis of overall safety from these phase 2 studies was also reported at ASH 2011. The pooled analysis showed that only 10% of the 526 patients on these studies required a dose reduction because of side effects. Eighteen percent of patients were able to stay on the treatment for at least 12 cycles. With regard to peripheral neuropathy, only five patients (1%) required dose reduction or discontinued therapy.
The ability of patients to tolerate their therapy for multiple cycles is important in achieving a response. Preliminary results of a continuation study suggest there are no cumulative long-term effects of single-agent carfilzomib.
Based on the results of PX-171-003-A1, the FDA has granted a standard review for consideration of approval of carfilzomib. This means a decision on approval will likely occur in the fall of 2012. A word about phase 2 trials, though: We have seen many instances where phase 2 results are not substantiated in randomized phase 3 trials. Even if approved on the basis of the phase 2 trial, the FDA will likely require a phase 3 study to confirm the phase 2 results. Phase 3 trials are under way in Europe and the U.S. The European trial, FOCUS, is evaluating carfilzomib versus best supportive care in patients who have had three or more prior therapies. The U.S. trial, ASPIRE, is assessing combination therapy with Revlimid/dexamethasone with and without carfilzomib in patients who have received one to three prior therapies.
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BY GUEST BLOGGER | DECEMBER 30, 2011
CURE asked Anas Younes, MD, professor in the department of lymphoma/myeloma, division of cancer medicine at M.D. Anderson Cancer Center in Houston, and a CURE advisory board member, for his thoughts on the lymphoma advancements announced at this year's American Society of Hematology.
I finally got to blog on what is news at this year's ASH meeting in San Diego. Almost 20,000 people attended the meeting, and more than 1,000 studies were presented on hematologic malignancies and benign hematologic disorders. But for lymphoma, I think the most important studies are the following three. That is not to say that other studies are not significant, but I think the following ones have a more relevant impact on the treatment of lymphoma. I will explain why.
A Phase III Randomized Intergroup Trial (SWOG S0016) of CHOP Chemotherapy Plus Rituximab Vs. CHOP Chemotherapy Plus Iodine-131-Tositumomab for the Treatment of Newly Diagnosed Follicular Non-Hodgkin's Lymphoma We all know that radioimmunotherapy (RIT) is active therapy for lymphoma. Two drugs (Iodine-131-Tositumomab (Bexxar) and ibritumomab tiuxetan (Zevalin) are already approved by the FDA for the treatment of relapsed follicular and indolent lymphoma. But in clinical practice, the use of RIT has been relatively modest compared to other newly approved drugs. Despite the documented safety of these agents, there is still a perception among oncologists and patients that these agents are not as safe as other drugs. Many of us wanted to see whether the use of RIT may improve patients' survival, which has not been shown in a randomized study. If so, such data would certainly re-energize the RIT field. This phase 3 randomized study was positioned to answer such a question.
Unfortunately, there was no difference between RCHOP and CHOP followed by Bexxar. I am sure many experts will try to dissect the data in many different ways, including whether this data is applicable to all RITs or just Bexxar. Should we do another randomized study with Zevalin? May be with rituximab maintenance? Should we include rituximab in both treatment arms as part of the induction? But at the end of the day, this trial as good as it is, will not help move RIT forward. With the current competitive environment that includes many new promising agents that have minimal side effects, I think the use of RIT, as we currently know it, will continue to decline.
Frontline Therapy with Brentuximab Vedotin Combined with ABVD or AVD in Patients with Newly Diagnosed Advanced Stage Hodgkin Lymphoma Brentuximab vedotin (or SGN-35) has produces 75 percent response rate in heavily pre-treated patients with relapsed Hodgkin lymphoma (HL). So, it makes sense to move it up front and test in newly diagnosed patients whose tumors are less resistant to therapy. Because HL is highly curable with chemotherapy, such as ABVD, it is unethical to test brentuximab alone in these patients. Instead, it makes more sense to add it to ABVD hoping the combined brentuximab + ABVD will be more effective. However, to prove the point, multiple steps needed to be taken. The first step was the core of this clinical trial: Is it safe to combine brentuximab with ABVD, and what is the optimal dose that we can use in such combination? Because ABVD is the standard regimen, it is kept intact while the doses of brentuximab are escalated to maximum dose.
During the conduct of this study, an increase in the incidence of lung complications were observed, which were similar to bleomicin toxicity: shortness of breath, dry cough and lung infiltrate. This toxicity was reversible in 9 of 10 patients with simple measures that included discontinuation of bleomycin and administration of steroids. But because bleomycin is the weakest drug in the ABVD regimen, and usually associated with unpredictable lung toxicity, it was eliminated to generate a brentuximab + AVD combination. At the time of the study presentation, brentuximab + AVD was not associated with any lung toxicity.
What was presented at ASH and was not in the printed abstract is the results of interim PET scan results after two cycles of therapy. With ABVD alone, we typically see 20 percent to 30 percent of the patients continue to have PET positive scans after 2 cycles, which usually correlate with bad prognosis. In contrast, after 2 cycles of brentuximab-based therapy (with ABVD or AVD), only 3 percent of the patients had positive PET. So these results look very encouraging, but of course we need more time and longer follow up to find out what this all means. Obviously, the ultimate test will be to compare the standard ABVD with the new regimen brentuximab + AVD in a randomized trial. This study is planned for the end of 2012. The outcome of such trial may indeed change the standard of care for patients with HL.
The Bruton's Tyrosine Kinase (BTK) Inhibitor PCI-32765 Induces Durable Responses in Relapsed or Refractory (R/R) Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL/SLL): Follow-up of a Phase Ib/II Study and The Bruton's Tyrosine Kinase Inhibitor PCI-32765 Is Highly Active As Single-Agent Therapy in Previously-Treated Mantle Cell Lymphoma (MCL): Preliminary Results of a Phase II Trial There is a lot of buzz about the promising clinical results with the oral small molecule inhibitor PCI-32765, which inhibits an enzyme called Bruton kinase. Last year, there was emerging data from a phase 1 study that also got a lot of attention. This year, the early results are now confirmed in a larger number of patients with CLL and MCL, both are practically incurable lymphoid malignancies.
In CLL, a 70 percent response rate was seen in 27 patients treated with 420 mg daily. This single-agent activity data is so impressive, so a randomized phase 3 study is being planned.
In MCL, results from an ongoing phase 2 study reported a response rate of 67 percent, which is also very impressive for a single agent in this disease. If this data continues to hold as more patients are enrolled, a phase 3 randomized study in relapsed MCL will be the obvious next step. There is a clear need for new agents for patients with MCL, and PCI-32765 may as well what we all have been waiting for!
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