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In May of 2012, I was a typical 14-year old kid; competitively dancing, playing the viola, involving myself in numerous educational extracurricular activities, and was ranked in the top ten in my high school class. However, my life was forever changed after a mass, weighing nearly 16 pounds, was discovered in my abdomen. The doctors diagnosed me with stage 4 neuroblastoma, an aggressive solid tumor arising in immature nerve cells, which had already spread throughout my bone marrow. At that moment, I felt anxious and a sense of doom, like my world was collapsing before my eyes. I was soon informed that the current survival rate for stage 4 neuroblastoma is only 30 to 50 percent, meaning that up to 70 percent of children diagnosed with this cancer do not survive. Even after being given statistics that weren't in my favor, I decided that day to stay strong and never give up. I have become a fighter, continuing to overcome obstacles and inspire others in similar situations.Since my initial surgery to remove the tumor, I have undergone six rounds of induction chemotherapy, a stem cell harvest, high-dose chemotherapy, a stem cell transplant, radiation and immunotherapy. I have been one of the lucky ones and have been no evidence of disease since my second round of chemotherapy. I am also now partaking in a clinical study to maintain my remission status. While undergoing treatment, I spent nearly my entire sophomore year of high school in the hospital, in complete isolation, and in the pediatric intensive care unit. While in treatment, I met other cancer warriors and parents who had children that were not as lucky as I was. These people emphasized the significance of being grateful for the life one is afforded and to take advantage of all opportunities placed in one's path. People came and went, some walking out of the hospital after learning that they had beat this beast called cancer. Others were put on hospice and given days to live. After meeting these inspirational warriors and learning that only 4 percent of the national cancer budget is allocated to pediatric cancer research, I took the initiative and established my own non-profit organization. I created a foundation to increase awareness regarding the commonality of pediatric cancer and to assist adolescents while undergoing treatment. I started a 

to share my experiences with the desire to foster courage and hope in others. Chronicling my journey allowed me to express my inner-most thoughts and feelings, which otherwise I may not have verbally expressed. The responses of those I did not even know influenced my life in a positive manner and encouraged me to continue fighting and maintain an optimistic view. My blog was originally created with the intention of motivating others, but I was actually the one being uplifted. In August of 2013, I was contacted by the 

, the largest funder of pediatric cancer research grants besides the United States government, to serve as one of its five 2014 

. The organization hosts thousands of head-shaving events around the nation to stand in solidarity with pediatric cancer warriors and to raise money to fund the best 

. I accepted the offer and now attend events around south Florida, serving as a guest speaker and a face of childhood cancer. I have learned about my true self through this experience and I am now able to display my inner passion to serve as an advocate for pediatric cancer. In the future I aspire to become a pediatric oncologist and researcher, giving back to the community that saved my life. This past summer I had the opportunity to work as an intern in a pediatric oncology laboratory at MD Anderson. Working alongside professionals in the field, I learned that an immense amount of knowledge and dedication goes into creating new treatments. I hope one day that I will be able to create innovative treatments and give innocent children a fighting chance. My life mission is to improve the fact that 46 children are diagnosed with cancer and seven will succumb to the disease every day. 

Lauren Bendesky, 16, from Coral Springs, Fla., was diagnosed with stage 4 neuroblastoma when she was 14 years old. Lauren has finished treatment and is looking ahead to college with plans to study biology and become a pediatric oncologist.

Articles

A journey from neuroblastoma to ambassador

Did you know September is National Childhood Cancer Awareness Month? If not, you're not alone. Unlike many other months and the causes that they are attached to, the color gold will likely not take over store shelves in September to mark the awareness month, nor will buildings light up in the color to show their solidarity. Instead, the childhood cancer community will work extremely hard to bring National Childhood Cancer Awareness Month into the limelight, hoping to garner the attention of the general public. It is not an understatement to say that I am thrilled for all the attention that is given to worthy causes – though pink is not my favorite color, seeing the outpouring of generosity for breast cancer awareness in October is something to marvel at. I would say something very similar for February when red is everywhere you look, not only for Valentine's Day, but also for American Heart Month. I hope that all of these causes garner the attention of the masses, but I have to ask myself, is it so wrong to find frustration in the fact that cancers affecting our children continue to fly under the radar.When my daughter Alexandra "Alex" Scott was diagnosed with cancer prior to her first birthday, I certainly didn't know that an infant having cancer was in the realm of possibilities. I also didn't know that kids still died from cancer. Alex would battle cancer for the next eight years of her life, and would quickly outgrow the treatment protocols for her form of cancer, neuroblastoma. Imagine that, not only does your child have cancer, but the doctors are at a loss of how to treat her. We were fortunate enough to find clinical trials that would prolong Alex's life and give her a good quality of life; and while she would change the lives of so many through her lemonade stands, she would not see the day when cures would become realities. My daughter Alex died in 2004 at the age of 8, over 10 years ago, and still, as we are in contact daily with families facing childhood cancer, there are children facing the same fate. While our Foundation, and others are working to find cures, have funded groundbreaking research, some of which are leading to cures, there is still so much to be done. To me, without the support of the general public, a mass audience, childhood cancer will never garner the attention it deserves.In this very respect, Alex's Lemonade Stand Foundation is gearing up for the month of September in which we will invite runners, walkers, cyclists and everyone to contribute their miles as we collectively aim to log one million miles throughout the month. Why one million? Because what parent wouldn't go that distance, and then some, to find cures for their child? Also, Alex set a goal of raising $1 million in 2004, and while some people, including me, thought that was an unattainable goal, Alex did it with the help of others. Children with cancer need your help. They need your help in bringing the cause into the spotlight, not only in the month of September, but every day of every year until cures are found.  Will you join us on our #Journey2aMillion this September? Whether you do, or not, I hope you will take the time to tell one, two or three people that September is National Childhood Cancer Awareness Month – you can be a part of finding the cures we are so desperately seeking. To find out more about childhood cancer, or to join Alex's Million Mile – Run. Walk. Ride., visit 

Jay Scott is the co-executive director of Alex's Lemonade Stand Foundation. When his daughter Alexandra "Alex" Scott decided to hold a lemonade stand to help doctors find new treatments and ultimately a cure for all childhood cancers, including her own, Jay and his wife Liz supported Alex's mission every step of the way. After cancer took Alex's life they continued Alex's legacy of hope. What started as the vision of one little girl has been embraced by a team of 100,000 volunteers.

Going the distance for cures: National Childhood Cancer Awareness Month

I frequently give lectures. As a speaker, it can be a drag to talk right before lunch or a really serious drag to talk last at the end of a several day conference when even interested people fidget, yawn and squirm. So I was taken aback recently when giving a late afternoon lecture to a room packed with cancer survivors. I noticed a fit, 30-something looking woman in the second row not fighting to stay alert, but fighting to hold back tears. Hmmm. The lecture was on lymphedema, not advanced disease or recurrence.I continued on with the talk emphasizing positive points like the importance of being active, strengthening and exercise. Tears. I went on to show vibrant, engaging pictures of my breast cancer patients lifting weights, doing planks and cycling while training for a triathlon. More tears, and now her lower lip is quivering.  Our eyes met and I gave her a subtle wink, non-verbally saying, "Let's talk later."We met up after the room cleared. As she gathered herself, I racked my brain trying to come up with what I said that was so distressing. She finally spoke: "They told me I couldn't do any of that anymore."Wow. It wasn't what I said, it's what they said. "They" being her treatment team. Many of the lymphedema precautions spouted over the years were based on the conventional wisdom of way too long ago and on the old premise that if we tell people to do nothing, they'll be safe. Don't push, don't pull, don't lift, don't carry and you will be just fine. It turns out though, that the people that sat on the couch got just as much lymphedema as the people out playing in the park. It turns out that while some were told not to fly or lift anything over 10 pounds, other cancer survivors were safely becoming flight attendants and Olympic athletes. Arguments went on for years over what was best. The right answers, based on research and anatomy, are now clear. The lymph system is mostly passive, which means it relies on other forces to absorb and move fluid. Those "forces" include movement, muscle contractions, increased heart rate and increased breathing rate.  Yikes! I guess telling people not to move wasn't a good call. Though changes to the body from lymph node removal and radiation are not reversible, weakness, stiffness and decreased mobility are.  Whether you have lymphedema or are at risk for it, your arm, chest and shoulder (or whatever area lymph nodes were removed) should be strong, pain-free and function normally, regardless of the type of surgery.  If not, you are doing your lymphatic system a huge disservice. Studies show that rehabilitation and exercise, including lifting weights, both reduces the risk of lymphedema and decreases lymphedema symptoms.  And all the walking you are doing (you are walking, right?!) is helping improve your body mass index which has also been shown to decrease lymphedema symptoms and risk.Survivorship is already saddled with enough uncertainty to shed tears on misconceptions.  Do not limp through your survivorship. Push, pull, lift, and carry. "Moving is living" holds true for your lymphatic system as well; the more the merrier, the more the healthier. Go take a walk.  Your body has been through a lot, you deserve it.

Leslie J. Waltke is a physical therapist with a clinical mastery in oncology. She is a national expert, author, speaker and educator in cancer rehabilitation and is the Cancer Rehabilitation Coordinator for Aurora Health Care in Milwaukee, Wisconsin.

Tears in the second row

When someone is facing a lymphoma diagnosis the last thing they think about is public policy. However, public policy has the potential to impact the health, treatment and long-term survivorship of lymphoma patients just as much as scientific discovery.Today, the individuals who develop these policies (elected officials, policymakers and regulators) directly impact the medical treatments patients access, the nation's investment in innovative research, and even the way in which health insurers pay for cancer care. Unfortunately, the majority of these decision makers know little about lymphoma. That is why it is critical for those people affected by lymphoma to become advocates and take an active role in the policy making process.With that in mind, the Lymphoma Research Foundation (LRF) established the Lymphoma Education and Advocacy Partners (LEAP) program. LEAP was created in an effort to coalesce the community around those policy issues which have the greatest potential impact on the lymphoma community. LRF is excited to be joined by our founding member organizations: the Cutaneous Lymphoma Foundation (CLF), the International Waldenstrom's Macroglobulinemia Foundation (IWMF), the T-cell Leukemia Lymphoma Foundation (TCLLF) and The Double Hit Lymphoma Foundation (TDHLF).  LEAP will explore both legislative and regulatory initiatives and focus on those issues of highest priority to people with lymphoma, including access to quality cancer care, treatment cost, investment in innovation and lymphoma clinical trials.Through quarterly LEAP webinars, LRF will educate participants about these issues and prepare them to communicate with policymakers. These webinars will include presentations from experts in the field and will represent all points of view, including, scientific, legislative, and patient perspectives. At the conclusion of each webinar, participants will be given action items, such as email advocacy alerts that they can easily send to their Congressional Leaders.    LEAP's fundamental goal is to bring together patient advocacy organizations with similar missions to educate and advocate on behalf of the lymphoma community. We believe that through the collective voice of patients, survivors, caregivers and medical professionals, that legislation and policies can be developed so as to positively impact the lives of Americans living with a lymphoma diagnosis.To learn more about LEAP please visit 

Robin Roland Levy is the Director of Public Policy and Advocacy at the Lymphoma Research Foundation. In this capacity, she leads the Foundation's legislative and policy initiatives before the U.S. Congress and federal agencies, and coordinates the activity of the organization's advocate community.  

LEAPing into lymphoma advocacy

When Andrew Tomasello, of Little Silver, N.J. was chosen as an audience member to step on stage with Jimmy Fallon on "Late Night with Jimmy Fallon" in 2010, it was "one of the best days" of his life. Key word: 'was.' "I can't say that anymore because I beat cancer," he tells me. In 2012, Andrew, then 20, was living the life of an aspiring politician and broadcast journalist in Washington, D.C. He was elected chairman of the College Republicans at The Catholic University of America, interned at N.J. Gov. Chris Christie's office and had a job lined up at a TV station. Everything was going great until a tumor was diagnosed on his pelvis. It was deemed non-malignant, so he had non-surgical treatment to remove the tumor, and went on with his life. When the tumor reccurred a year later, it was malignant; and Andrew received a diagnosis of osteosarcoma. That May, Andrew underwent a 10-hour surgery in which two-thirds of his pelvis was removed. "A significant part of the surgery was spent separating the tumor from his nerves so that his leg would not be paralyzed and would function, as well as his bladder and bowel," says Andrew's Orthopedic Surgical Oncologist James Wittig, chief of Orthopedic Oncology at John Theurer Cancer Center in Hackensack, N.J. Thankfully, Andrew didn't have to undergo amputation. "In Andrew's situation, I was able to save the important nerves, blood vessels and muscles necessary for saving the leg," Wittig says. Andrew had to start treatment almost immediately following the surgery. On July 1, 2013, he had the first of his 19 rounds of chemo. His treatment also included 35 rounds of radiation. He spent the "Big 21" in the hospital due to complications from treatment. "It's ironic because I always knew I would spend my 21st birthday in the hospital sick, but I never thought it would be for chemo," he says. Andrew spent a couple nights in the hospital for each chemotherapy treatment. During that time, he developed close friendships with his healthcare team, especially his nurses. He often posted photos on his Facebook and Instagram account of times with them.

While Andrew maintained a very optimistic spirit, he had his down times; especially in the beginning. "Yeah, I had cancer, it sucked," he says. He was saddened by having to put his life on hold; his job, school and independence--a common issue young adults with cancer face during treatment. However, the feeling was short lived. "It is hard to see anybody diagnosed with a cancer, let alone such a young man just starting college and getting his life underway," Wittig says. "He approached the entire situation very bravely." Andrew was officially deemed in remission on April 17. "I'm 100 percent cancer–free, and it's all because of Dr. Wittig," he says. "He's the greatest man on the face of the earth."  It was just as beneficial for Wittig. "Personally, I gain such an incredible amount of fulfillment from taking care of such a brave young person and being presented with one of the largest most challenging limb-sparing surgeries and having a perfect outcome in an immensely positive and grateful patient. I will have the delight to watch Andrew finish college, lead a productive life and grow old with a great quality of life," he says.

On July 29, Andrew was able to have a "cancer-free" birthday. He was thrilled not to just make up for his 21st, but to be able to celebrate more birthdays. He was set to make "22 the new 21" with his hashtag 

. He admits that he, at first, was in denial about getting older, but now he embraces it.

When Andrew and I discussed the movie "The Fault in Our Stars" (TFIOS) and he says that while it wasn't the perfect portrayal of cancer, it's very eye-opening. He says the problem with cancer portrayal in today's storytelling is "throwing cancer into the story just for the sake of having cancer," especially with love stories. That can be misleading, he says. TFIOS "wasn't a love story that someone threw in cancer." It's a cancer story from the beginning.Wittig says that cancer in storytelling gives young patients "courage and positivity." He says it "brings a public awareness about sarcomas and childhood cancers. It shows young adults that they can lead a normal productive life despite being stricken by such a difficult disease and that this can be overcome just like any other obstacle."TFIOS best relates to Andrew's story and the person he is. He jokingly tells people that he's just like Augustus Waters. They both had the same cancer and prospective. "The only difference is I lived and didn't lose a leg," he says. He also makes subtle jokes, like Waters. Watch this 

and see for yourself.Wittig says one important thing young adult cancer patients can learn from Andrew is "how to make the best of a tough situation." "There were many times when Andrew was in the hospital receiving chemotherapy and posting Facebook updates with smiling and laughing photos with his nurses," he says.Andrew offers three bits of advice for young adults battling cancer. 1) It gets better. Just take it one day at a time.

2) You won't see it now, but you'll be a better person in the end. 

Jennifer Nassar is the senior editorial intern at 

magazine. She is a second-year graduate student at the University of North Texas and a 2013 graduate of the University of Mississippi.

Older is better

August is Summer Sun Safety Month, an ideal time to think about the effectiveness of your sun protection habits. Protecting your body from the damaging rays of the sun has always been a serious health issue, but with SPF numbers ranging from two to 100 and new "sunscreen" pills hitting the market, it's surprisingly difficult to understand how much and what type of protection is best. It's important to know the facts so you don't get 'burned' by your sunscreen now and in the future. For instance, when it comes to sunscreen, more is better. Many people don't slather on enough sunscreen to get the full protective coverage they need. Look for a product labeled "broad spectrum" with an SPF of 30 for the best protection against skin cancer. Apply sunscreen about 30 minutes before sun exposure and use about 1 oz. of sunscreen for the body, which is enough to fill a shot glass. Reapply that same amount every two hours. For a day at the beach or the pool, one person should use about half of an 8 oz. bottle.I see a lot of patients who think sunscreen with a higher SPF means they can apply less and stay out in the sun longer. That's not true, and SPF numbers can be deceiving. For example, SPF 15 blocks about 93 percent of harmful sun rays, and SPF 30 blocks about 97 percent. Thus, doubling the SPF doesn't necessarily provide that much more protection. I tell my patients that SPF 30 is usually sufficient for most people, and the focus should be on reapplication every two hours or sooner, if you're sweating a lot or in the water.Keep in mind that no sunscreens are "waterproof." If a lotion is labeled, "water resistant," the FDA now requires manufacturers to designate how long the sunscreen is protective while swimming or sweating. I also caution patients about using spray-on sunscreen. It's a great option, but it can be difficult to get an even application. Make sure you spray an even coat across your skin, holding the bottle about 4-5 inches from your body. Be careful not to inhale spray sunscreen. When applying it to the head or neck, spray it into your hands first and then rub it onto the face, neck or scalp.  Although researchers are trying to develop a true "sunburn pill," the ones available today are only supplements, not federally approved medications. While they may seem like a safe alternative to sunscreen, there's no real evidence that pills alone offer protection from the sun's rays. Antioxidants in some supplements have shown promise, but before taking them you should talk to your doctor, as they could interact with other medications. In addition to sunscreen, I advise patients to use other methods to protect themselves from the sun, such as clothing that covers their arms and legs, wide-brimmed hats that protect the face, head and ears, and sunglasses that have 100 percent UV protection. You can also buy clothing that has sun protection in it, called UPF or ultraviolet protection factor. It's also a good idea to avoid midday sun, the time when the sun's rays are the strongest.  By taking action to avoid being burned by your sunscreen this month, you're taking action to protect yourself from skin cancer in the future. Simply knowing your number and the best ways to apply your lotion can reduce serious health risks. The next time you sit in the sun, remember to separate the facts from fiction.    

Shannon C. Trotter is a dermatologist at The Ohio State University Comprehensive Cancer Center specializing in skin cancer.

Shedding light on sun protection: Separating sunscreen facts from fiction

hosted a Facebook Chat on neuropathy after a cancer diagnosis. We invited Michael Stubblefield, a cancer rehabilitation physician at Memorial Sloan Kettering Cancer Center; Pam Shlemon, executive director of the Foundation for Peripheral Neuropathy; and 

editor-at-large Kathy LaTour to answer your questions on neuropathy. Stubblefield specializes in the identification, evaluation and treatment of neuromuscular, musculoskeletal, pain and functional disorders caused by cancer and cancer treatment. In addition to neuropathy, he also takes care of complications of radiation and surgery as well as of the cancer itself. You can view the full chat 

with a Facebook account. This was one of the most fast-paced and involved chats we've had to date. Our experts answered most of the questions posed during the chat and a few that were emailed and posted ahead of the chat on the 

page. Here is a selection of the questions answered during the chat: 

 Our first question for our panel comes from an earlier email: Pam, what are the main symptoms of neuropathy? Can there be different symptoms for different people? 

 CIPN symptoms usually appear symmetrically in a stocking-glove shaped distribution in the feet and hands. Typical symptoms include numbness, tingling, burning and electric-shock like symptoms or muscle weakness. Affected patients can experience impairments including difficulty in walking, increased risk of falls and weakness and restrictions in fine motor skills such as writing and other manual tasks buttoning your shirt. 

 Today is Round 12 of 12...The neuropathy (both fingers and feet) didn't come on until the last week or two...Should it go away over time? Is there any kind of exercise/therapy I can do to help get rid of it? 

 This is one of those questions that is answered with a probably. Doctors don't know who will get neuropathy and they don't know when it will end. The majority of neuropathy resolves over time after treatment ends. I have friends whose neuropathy resolved over a year and some over six months. 

 I had breast cancer over 11 years ago and one of the chemo drugs I was on was taxatear...I started having neuropathy in my feet, toes, and fingers then. I still have some problems with it today. Does neuropathy still happen years after treatment? 

 One of the common questions I see asked is if the neuropathy will ever go away. The answer to this depends... Most of the time chemotherapy-induced neuropathy does improve over time. In some cases, however, it never goes away. That being said, there are usually effective medications to treat the pain and tingling that goes along with neuropathy. Weakness can usually be improved with physical therapy. Numbness (the lack of sensation) and other symptoms don't respond to medication. The most common causes of neuropathy in the cancer setting are chemotherapy and the cancer itself. There are a number of less common causes like paraneoplastic disorders. Paraneoplastic disorders occur when the tumor secretes a hormone or protein that causes problems. For instance, certain types of lung cancer (Small Cell) are known to cause a paraneoplastic peripheral neuropathy by causing the development of an antibody that damages nerves. Nerve damaging chemotherapies include the taxanes (taxol, paclitaxel), the Vinca alkaloids (vincristine) and the platinum drugs (carboplatin, cisplatin). Other types of chemotherapy such as thalidomide, bortezomib, Epothilones also cause neuropathy. The type of neuropathy caused by the platinum drugs and most other types of chemotherapy can be very different because of the way they affect the nerves. Taxanes and Vinca alkaloids damage the long axon fiber of the nerve and tend to cause a neuropathy that can be painful, or associated with abnormal sensations (paresthesias). Weakness is also a common feature of these medications in severe cases. The platinum drugs damage the cell body of the nerve as opposed to the axon and tend to cause more sensory issues such as pain and sensory loss. Platinum drugs do not usually cause weakness although they can cause problems walking because the sensation nerves are greatly affected. It is important to determine what the exact cause of symptoms is because the treatment can be very different. For instance, if a patient has tingling in the hands because of carpal tunnel syndrome they might benefit from occupational therapy, hand splints, anti-inflammatory medications, or even surgery. 

 Is there a difference between neuropathy from diabetes and from chemo? How about Parkinson's? 

 Just the only difference is the causes, the symptoms are typically the same and the treatments are also typically the same. The only difference is the nerves that are effected - small fiber and/or large fiber 

 Not every treatment works for all patients. Patients that I have spoken to who have tried acupunture are mixed. Some patients have found relif and other have not. Treatments for PN are not a "one-size" fits all. It is worth giving it a try - there is something out there for everyone. 

 There is a question about if radiation can cause neuropathy. This is one of my favorite topics. Radiation does NOT cause peripheral neuropathy but it can damage the nerves running through the radiation field. For instance if a patient received radiation for breast cancer years ago they can develop brachial plexopathy which will cause numbness, tingling, weakness, and other symptoms that mimic neuropathy. Similarly focal radiation for things like sarcoma can damage the nerves that go through the field. This is called a mono (meaning one) neuropathy as opposed to a polyneuropathy. 

 Pam asks: I had SGAP (breast reconstruction surgery) five years ago. I have tingling and numbness above, below and to the sides of the incision. I had no idea that this could happen. How many others have neuropathy from surgery alone? Is there anything that helps? 

 There is a question on pain in the breasts or arm pit after mastectomy and reconstruction. This is a situation where neuropathic symptoms are NOT caused by peripheral neuropathy. It sounds like you have what I call post-mastectomy reconstruction syndrome (aka, post-mastectomy syndrome). Numbness, tingling, spasms, arm weakness, a feeling of constriction in the chest and a number of other symptoms often result from mastectomy and importantly reconstruction. There are a number of different disorders that make up this syndrome but none are peripheral neuropathy. In this case, it sounds like the small nerves that supply the chest and sometimes back were damaged during the surgery and reconstruction. A number of other issues like restriction of the fascia (connective tissue that binds the muscles and bones) are also contributing. This is not uncommon. One nerve that is often damaged is called the intercostobrachial nerve. It is important to understand that this isn't a surgical complication per se but simply a consequence of the surgery that happens in a small percentage of women. The treatment varies but physical therapy emphasizing myofascial release is often extremely helpful. Some of the same medications used to treat neuropathy such as duloxetine (Cymbalta), pregabalin (Lyrica), or gabapentin (Neurontin) are also often very useful. One of the common questions I see asked is if the neuropathy will ever go away. The answer to this depends... Most of the time chemotherapy-induced neuropathy does improve over time. In some cases, however, it never goes away. That being said, there are usually effective medications to treat the pain and tingling that goes along with neuropathy. Weakness can usually be improved with physical therapy. Numbness (the lack of sensation) and other symptoms don't respond to medication. There are questions about the percentage of patient who get neuropathy from chemotherapy. The answer is that it depends on the type of chemotherapy, the dose, and the way it was delivered as well as the type of patients who get it. While 40% may get neuropathy with certain medications and regimens, it goes away for many of them. Unfortunately not everyone will have the neuropathy go away. 

 What types of integrative therapies are worth trying for patients with neuropathy? 

 Complementary: While complementary and alternative forms of medicine are often thought of interchangeably, there are differences. Complementary therapies are used together with conventional medicine. This might include a regimen of vitamins, supplements, herbs, and 'natural' substances to be used in conjunction with other medications. Integrative: A total approach to health care, integrative medicine combines conventional and CAM therapies into a treatment plan where there is some high-quality evidence of safety and effectiveness. Complementary and alternative medicines (CAM) are divided into several broad categories:

ï¿½ Natural Products: This category is the most popular form of CAM, used by more than 15% of the U.S. population. These include herbal medicines, vitamins, minerals, and products sold over the counter as dietary supplements.

ï¿½ Mind and Body Medicine: Using mind and body practices that focus on the interactions among the brain, mind, body, and behavior, to affect physical functioning and promote health. Examples are: Meditation, yoga, acupuncture, deep breathing exercises, hypnotherapy, progressive relaxation, and tai chi.

ï¿½ Manipulative and Body-based Practices: These practices focus primarily of the structures and systems of the body, including bones and joints, soft tissue, and circulatory and lymphatic systems. Spinal manipulation and massage fall into this category.

ï¿½Energy medicine is among the most controversial of the CAM therapies. These therapies involve the manipulation of various energy fields to affect health. The most common practices include those involving electromagnetic fields (magnet and light therapy). 

Hi Dr Stubblefield, I have RFS and some neuropathy after having HD in 1989. I live in Ireland and was wondering if there are any of your colleagues working in this part of the world. 

 Unfortunately there are not a lot of doctors who have knowledge and experience with this disorder. While we are training a number of Cancer Rehabilitation Fellows here in the United States, I don't know of physicians in other countries who would be able to deal with the neuromuscular and musculoskeletal complications of HL. Treatment of these conditions requires a team approach from both physicians and therapists. There are doctors who have knowledge of the cardiac, secondary cancer, and other medical effects. These are usually in Survivorship Programs. 

 Collaborate with your team and report symptoms you notice during treatment: Dose reduction, rest period, or halt therapy

Medication before or during chemo. Examples: Calcium and Magnesium infusion, new evidence strongly suggests that intravenous calcium and magnesium therapy can attenuate the development of oxaliplatin-induced CIPN, without reducing treatment response. Accumulating data suggest that vitamin E may also attenuate the development of CIPN, but more data regarding its efficacy and safety should be obtained prior to its general use in patients. Other agents that look promising in preliminary studies, but need substantiation: Acetyl-L-carnitine, Alpha lipoic acid, Duloxetine, Glutamine, Glutathione, Oxcarbazepine, Xaliproden, Venlafaxine 

I'm 7 yrs post chemo for breast cancer. Had 4 rounds of adriamycin and cytoxin. I've started having burning pain in 1 foot the last couple of months that the Dr says is neuropathy from the chemo. How long after chemo can neuropathy start? 

 There are a lot of questions on if neuropathy from chemotherapy can come up years later. It is not possible to get neuropathy from chemotherapy years later. Certain medications like the platinum analogs (cisplatin, oxaliplatin, carboplatin) can do what is called "coasting." This means that the medications damage the nerve cell body over time and result in symptoms a few months (not years) later. In these cases, the symptoms usually start during or just after chemotherapy and can progress for 6 or even 9 months before they level off. When a patient develops neuropathic symptoms years after chemotherapy then it is ALWAYS another disorder that is responsible. Certainly having the nerve previously damaged can contribute to the development of neuropathic symptoms years later because the nerve is weakened but still there must be something else going on for a patient to develop symptoms. Common things I see causing neuropathic symptoms years later are spinal stenosis or another type of neuropathy such as diabetes, B12 deficiency, CIDP (chronic idiopathic demyelinating polyradiculoneuropathy), etc. It is important to figure out what the cause of these symptoms is because the treatment of neuropathic symptoms varies considerably for all of these disorders. For instance, if neuropathy is caused by B12 deficiency then replacing B12 can make the patient much better. 

 When I visited with a podiatrist a few months ago, he said he is seeing many more cases of neuropathy that is ideopathic, meaning for no apparent reason. He said the numbers have really increased. 

I went through detox after a year and several months from a Stem Cell Transplant for Stage IV non-Hodgkins Lymphoma. My feet hurt so bad that I crawled through my Mother's house. I could no longer watch her cry or being in so much pain. Is this something that you would recommend? 

 Support groups are very beneficial to all PN sufferers. It allows you to hear what other are going through and successful treatments that are working. If you need to find a support group in your area you can contact the Foundation for Peripheral Neuropathy. Many support group bring in speakers such as, physical therapist, neurologists, dietitians, Tai Chi experts and others to educate patients on neuropathy and treatments. 

I have neuropathy in feet and fingers I have resigned myself to the fact that it will always be there. Chemo ended 3 yrs ago and I hate to take another drug to fight this. Is there anything besides drugs that will help? 

 Yes, you can try Complimentary & Integrative medicine, acupuncture, massage, biofeedback, Tai Chi 

Can neuropathy affect only one foot, or does it always affect both? 

 It can affect only one foot. I have CIPN from cancer and only affects my one foot 

 This is not likely to happen with chemotherapy as they usually cause a distal symmetric type of neuropathy. When neuropathic symptoms are asymmetric this almost always means that there is something else going on. For instance if a patient has a pinched nerve in their back from a disk, then this can become symptomatic when they are challenged with neurotoxic chemotherapy. Similarly, if you have carpel tunnel syndrome and then receive a medication like taxol, vincristine, or a platinum drug, it can make your carpel tunnel syndrome worse. I see these types of issues in clinic all the time. 

Can you please provide further information on physical therapy? 

 Physical therapy is excellent for improving strength, gait, and other functional deficits. Occupational therapy is excellent for improving a patient's ability to participate in activities of daily living. It is not as good at improving numbness and tingling. Some modalities like TENS can help improve these sorts of symptoms. 

Hi my name is Robb Bolton and I have a nonprofit the offers exercise and wellness programs for Cancer Survivors. We have created a class specific for the symptoms of foot neuropathy. Our program includes exercises for foot strengthening, flexibility, mobility, balance and massage techniques. We have had over 40 participants so far with great success. I am curious if you have heard of any similar programs and if so where? I think we could be on to a potentially great program for foot neuropathy suffers but our nonprofit is small and I need help to research the benefits of our programs and gain support for the medical community. Thanks for any help. 

http://cancerfitinc.com/footsteps-forward.html Footsteps Forward cancerfitinc.com exercise program designed to address the symptoms of peripheral neuropathy of the feet and lower extremity. 

My ?s are similar to some posted already....numb finger, toes, left foot more than right dr. commented they should improve within year...I see many having this same issue, and not improved Have read the current article in 

....learning to adjust, seem to be what I am going to have to do.... it is disheartening Mine is Breast dancer stage IIIC Had taxol. Oct-Dec 2013 Herceptin began Oct goes through this Sept. 

 As the oncologist in the article said, it seems that every option seems to work for someone. Don't give up. Go to a neurologist and if they can offer no help, ask them who would be next. 

 I am very disappointed that I was not told that the neuropathy would not clear up totally.... I would have liked being told it would possibly linger .....going into treatment to begin w/ is overwhelming....so much to know/experience/ I had read tons, as I have had others in family w/cancer/all types, my hubby, just before me ! as it is I have come to terms w/ drs. constantly saying ... well everyone is different for everything to do w/side effects of all kinds....I do understand this thought, but feel that they could elaborate a bit more..... it is all sad, sad to me...and the "cheer leading" type comments get to me after awhile! 

 I agree with Kathy that patients must advocate strongly for themselves. The internet is a wonderful resource. I get 2-3 new patients a week from all over the US who have found me online. There are other specialists who are superb at diagnosing and treating neuropathy. Finding these folks isn't that difficult as they usually have online bios from their medical centers, private practices, or wherever they work. 

 What type of doctor is best to work with for neuropathy caused by chemo? Neurologist, Endocrinologist or other? 

 There are a lot of choices for this. Often a neurologist is the right choice but rehabilitation medicine specialists, pain management specialists, and even your PCP. In general neurologists and rehabilitation medicine specialists (physiatrists) are the best choice. That being said, not everyone has access to all types of physicians depending on where they live. 

 There must be a lot of frustration for people who have neuropathy but don't know where to go. This is particularly true for survivors in rural areas. If you don't have a neurologist, physiatrist, or pain management specialist who treats neuropathy available, then the task of treating you falls to the physicians you do have available (your internist, primary care physician, oncologist). Often it may be possible to get an opinion at a specialized center (I.e., the University of X) and take those recommendations back to your local physicians to co-manage you. I have a number of patients from all over the country and world that I do this for. The first step is finding the specialist willing to work with your home physicians. Most physicians at academic medical centers are willing to do this. 

 It is imperative that you become your own advocate for your healthcare. One way to find a neurologist that focuses in neuroapthy is to google their interests through their CV, Bios. Typically you find this information at larger academic centers. You can also call the neurologists offices and ask questions to see how knowledgeble they are. To see a list of questions to ask your doctor you can visit our website at www.foundationforpn.org for The Foundation For Peripheral Neuropathy. 

 While we have spent a lot of time talking about the causes and differential diagnosis of neuropathic symptoms we haven't talked much about treatment. There are several consequences of neuropathy as we have discussed including pain, numbness, weakness, gait disturbance, trouble with activities of daily living (ie dressing). Each complication may require a different treatment. Ironically pain is often one of the easiest symptoms to treat. The newer medications such as duloxetine (Cymbalta) and gabapentin (Lyrica) can be very effective and there is a recent article in 

demonstrating this. The use of this medication is a skill. They often need to be titrated slowly and to high doses. When the nerve stabilizing medications (Cymbalta, Lyrica, Neurontin, etc) do not work or only work partially, then opioids are often needed. The vast majority of my patients have very little pain when the medications are titrated to effective doses over time. The skill comes in getting them on the high doses while minimizing side effects. 

 Thank you to our guests, Michael Stubblefield and Pam Shlemon. Thank you to Kathy LaTour, CURE, and to all of you, for sharing your story and what you've learned while living with neuropathy. Please feel free to continue to use the Event page to share your story, tips and words of support to each other. Thank you and have a good day!

Facebook Chat recap Living with neuropathy

ATTN: Young adult cancer patients or survivors: Here's a chance to have your cancer story featured on curemagazine.com.Cancer is popular in storytelling today. Movies, such as "The Fault in Our Stars," "50/50," "A Walk to Remember" and more, have been sharing the cancer journeys of young people, particularly love stories during treatment. Is your story similar to a movie you've seen recently? How has it been different than the media's portrayal of cancer in young adult relationships? We want to share your story and opinion about how the entertainment industry gets cancer – both right and wrong.Send an email to jennifer.nassar@curemagazine.com with the following three sections:1) Story: A brief description of your cancer journey. When did you receive your diagnosis? Are you in remission? If yes, for how long? What physical and emotional struggles are you facing or have faced?2) Movie: Pick a movie that is similar to your story. How do you relate to it?3) Entertainment View: What's your opinion of how cancer is portrayed in storytelling today? Do writers need to do more research? Is it portrayed correctly? If it's not convincing, do you find it insulting to cancer patients and survivors?Send an email to Jennifer.Nassar@curemagazine.com, by 12 p.m. Central July 18. Please include your name, city, cancer type, phone number and email. If chosen, Jennifer will contact you to schedule an interview.

Story submissions: Young adults, love, Hollywood ... and cancer

In 2011, Army veteran Douglas Chase was diagnosed with brain cancer. A few months later, the cancer had spread. Chase and his wife Suzanne, who lived in Acton, Mass., drove to Boston for his treatments. It eventually became too much, and Suzanne decided to apply for care at a nearby Veteran Affairs (VA) hospital to make him more comfortable. They didn't hear back from the VA hospital administration, and Chase, a Vietnam veteran, died in August 2012. Shortly afterward, Suzanne filed for benefits from the VA to assist with funeral expenses; however, it was denied because Chase wasn't treated at a VA hospital. No kidding.Suzanne wanted to "put it all behind" her.  About a week ago, she received a letter from the VA addressed to her late husband. After two years, they offered her husband the opportunity to schedule an appointment. It was requested that he respond quickly.  This story has most Americans shocked; I'm not one of them.Honestly, I wonder if her husband would've received the proper care and treatment had he'd been able to schedule an appointment right away.Why do I ask this? My family went through a very similar situation with my grandfather (whom we refer to as Papa), a Korean veteran. Sadly, I never had a chance to meet him.In 1985, Papa was experiencing back pain, and went to see a doctor at a VA facility. The doctor felt around his back and said it was a muscle sprain. He was given pain medications and a whirlpool jet bath. This went on for two years. In that time, not one X-ray or any additional tests were done.My grandparents didn't think about going elsewhere for treatment. They trusted that the doctor was telling them the truth. In January 1987, they found out the truth. Papa was having chest pain one night, and my grandmother took him to the emergency room. An X-ray and additional tests were done. After sitting in the waiting room for a couple of hours, my grandmother was allowed to see him. When she walked into his room, he started crying and said, "I'm sorry." Before she could even ask "for what?" the doctor walked in and broke the news to her. Papa had a large tumor on his kidney that had metastasized to his lungs. "There's nothing we can do," the doctor told them.Despite what had happened, my grandmother held no anger toward the VA. "I was too busy being scared," she says.My grandparents still wanted to do "anything and everything" they could to help him. For the next few months, he underwent chemotherapy at a VA hospital, the same system that told him for two years he only had muscle sprains. In July 1987, at age 55, Papa lost what little battle he was able to fight. I read Chase's story on Wednesday, July 2, 27 years to the day that Papa passed. Some of my family members, particularly my mom, wanted to sue the VA. However, at the time, suing the government wasn't realistic, my grandmother says. "You didn't sue the government."Currently, there are over 100,000 veterans who have been waiting to schedule an appointment. Some have been waiting for more than three months. What scares me is thinking that some of these people could have something seriously wrong with them requiring and deserving immediate attention.Thankfully, the Senate passed a bill in June to allow veterans to seek private care. Criminal investigations of the VA's actions are also ongoing. Another area that concerns me is how the men and women on active duty are receiving medical treatment. Or are they receiving treatment? Those on active duty have a harder time getting care off a military post, if that's what they prefer. If they wish to receive treatment elsewhere, they have to request an "off-post referral." However, these can be hard to obtain.A friend of mine in the military was denied an off-post referral to see a specialist for severe knee pain. He had to wait a month just to schedule an appointment. Then, he had to wait a month between a MRI and other appointments.  With cancer, time is very fragile. It's very likely that someone with back, knee or stomach pain isn't going to automatically assume they have cancer, unless you work in the industry. It's important that people get in to see their physicians in a timely manner to receive the proper diagnosis. Something ironic about the letter sent to Suzanne Chase is that it stated that the VA is, "Committed to providing primary care in a timely manner and would greatly appreciate a prompt response. " This failed both my and the Chase family.OK, now here comes patriotic cliché me.In my opinion, the men and women in the military, retired or active duty, give and sacrifice more for this country than any of us ever will. It truly saddens me to know the number of veterans who have been on a waiting list for months. This situation can get more difficult for active duty military because there's not much they can do if they're not pleased with the wait or treatment. It's not like they can file a complaint to Uncle Sam. They have to do what they're told. Just like the military, I think it's only fair that the VA do what they're supposed to do; protect and serve those who protect and serve.

Jennifer Nassar is a graduate student at the University of North Texas. She is a summer intern for

Better late than never won’t be the same again

 editor-at-large Kathy LaTour and I met up cancer survivors Diana DeVoe and Debbie Fitzer in Dallas to see "The Fault in Our Stars," based on the book by John Green. Diana, 44, received a diagnosis of alveolar rhabdomyosarcoma at 18 in 1988. Debbie, 53, received a diagnosis of triple-negative breast cancer about nine years ago at 44.Diana's story was featured in the Fall 2012 issue of 

.During the movie, we laughed, and cried and cried. A word of advice for women: Don't wear eye make-up; you will leave the theater with raccoon eyes. Two hours and a few tissues later, we sat down for a causal discussion. During this, I noticed a very coincidental pattern that related Diana's story to the movie trailer.

TRAILER: "This is the truth...doctor's appointments..."

DIANA: She spent her 19th birthday in surgery to have two fingers removed on her left hand. After surgery, she underwent radiation and two years of chemotherapy.

TRAILER: "And worst of all, support groups."

DIANA: There were no support groups at the time of her diagnosis. She wouldn't have attended if there were any. "I didn't talk about cancer," she says.

TRAILER: "I'm in love with you." "I'm a grenade."

DIANA: She often pushed people away. "I didn't get into relationships," she says.

TRAILER: "We are a hot mess." (making love scene when Hazel struggles with her cannula )

DIANA: Being intimate was very hard for her when she wore a wig. "I would have to take it off, and then turn off the lights," she says.While we agreed it was a beautiful story, the cancer portrayal wasn't convincing. "They didn't seem sick," Debbie says. "She (Hazel) looked way too healthy.""When I heard that (thyroid cancer), I thought she would be pale, thin and incredibly frail," she says.When Augustus' cancer, osteosarcoma, returned and spread just about everywhere, he still looked like his "handsome" self, we all agreed.There was one side effect to Augustus' chemotherapy that was very realistic to Diana.WARNING: Spoiler alert, okay?

Augustus alerts Hazel to meet him at a gas station where he is parked. She gets there to find him crying and that he has a serious infection from chemo. "That was gut-wrenching for me," says Diana, who once had an infection from chemo with a temperature of 105 and was hospitalized.Debbie saw a relation to the financial struggles that can come with cancer. After a star-struck Hazel receives an email from her favorite author, she approaches her mom about taking a trip to Amsterdam to meet him. Her response, "We don't have the money."Debbie blamed financial stress for her cancer after she received a diagnosis. "I would constantly ask myself 'Can I work?', 'Can I pay my bills?'" she says.Diana and Debbie both agreed the discussion of cancer and death in the movie is a reflection of how more "comfortable" society is in acknowledging cancer.When Debbie was little, her grandmother died from breast cancer. She said she didn't see much of how her grandmother's cancer affected her family because no one talked about it."Back then, parents didn't want kids around cancer," she says. "But today, we're more open."One subject all of us kept going back to was love. Kathy thought the love "was too good to be true." Yes, the love in the movie is "amazing." But can we expect every movie about a cancer patient to be included in a love story? Is this becoming to cliché in the storytelling industry? My question to you: Is it right to use cancer to enhance a love story?

Does cancer equal love?

Somewhere along the line of my now long career, I became interested in learning more about the role of religion and spirituality in the care of patients needing palliative care. As other areas in palliative care got better and better, spiritual care remained little studied. Fortunately, since its origins with leaders such as Dame Cicely Saunders and Dr. Balfour Mount, inclusion of a person's spiritual needs has been a core part of the care provided by hospice as well as palliative care. Indeed, experience suggests that when spiritual care is present, patients and family caregivers alike seem more comfortable as they go through their difficult times.Spirituality, of course, is a very personal matter, but as doctors we ask our patients lots of personal questions when it is relevant to their case, such as information about their sex life. It is part of caring for the whole person. Clinicians may feel like they are crossing a boundary by raising the subject of religion or spirituality with their patients. Is it their place to raise the issue, or should they simply be prepared to answer questions from, and offer resources to, patients who raise the subject? Prayer does come up in our interactions with patients. We have the option to call upon the chaplain. The role of the clinician is assessment; so isn't it important then, if facing a crisis, to involve a chaplain or the patient's clergy if the person is in spiritual distress? I think so.Recently the HealthCare Chaplaincy Network sponsored six landmark studies on this issue. One of them, "Hospital Chaplaincy and Medical Outcomes at the End of Life," conducted by Tracy Balboni and her colleagues at the Dana-Farber Cancer Institute in Boston, focused on the presence and helpfulness of chaplaincy visits for patients with advanced cancer. The research showed how chaplain care influences patient well-being and decision-making for people facing serious illness. Over half (52.4 percent) of the 250 respondents reported not being visited by a chaplain. Of those patients who were visited by chaplains, 88 percent said the chaplaincy visit was helpful. Researchers also collected qualitative data in response to the question: "Please explain why your time with the chaplain was helpful or not helpful." Several patients said that the chaplain was "comforting," noting that the discussion, support and prayer with the chaplain were helpful. Though this data is still in the process of being collected, some preliminary conclusions indicate that though chaplain visits may not be as frequent as desired, when they do occur, they are generally helpful to patients.In several of the studies, the benefit of having chaplains available went beyond religious matters to human spirituality even for the non-religious. The implications are that chaplains can help with communication in the service of whole person care that integrates a person's spiritual resources with other resources in their well-being. Spiritual care is central to caring for patients. It should not be ancillary.Certainly not everyone who is dealing with cancer as a patient or as a survivor is in the hospital where they can meet with a chaplain. There is a new resource where you can find thoughtful and practical spiritual care information, resources and support provided by professional chaplains: ChaplainsOnHand.org. Besides the good content for anyone regardless of religion or beliefs, it enables you to chat with a chaplain by phone or email. 

Linda Emanuel is director of the Buehler Center on Aging, Health & Society at Northwestern University Feinberg School of Medicine and and the Buehler professor of Geriatric Medicine. She also holds the title of Senior Vice President for Research & Education, HealthCare Chaplaincy Network.

Spiritual care is central to patient care

Have you ever participated in a clinical trial?  They're VITAL to getting life-saving drugs on the market, but being a guinea pig is easier said than done.

), my most recent PET scan showed my breast cancer had progressed despite the medications I was taking. Even though my doctors recommended chemotherapy, I enrolled in a phase 3 clinical trial for the hot new PARP-inhibitor drug, BMN-673. 

Taking a clinical trial drug expands the very finite list of cancer drugs available to me NOW, and it can also help increase options for patients like me in the future (stage 4, ER-positive, BRCA genetic mutation).  

With the start of each new drug regimen, we pray for as much time as possible before progressing on that drug. Because once my cancer outsmarts the medication I am taking – and we know that it will – I have to cross that drug off my list and find a new one. When that happens, I try to ignore the little voice in my head that asks, "How many drugs are left?"  To be honest – I don't know, and I don't want to. Because the louder, more optimistic voice keeps yelling, "I don't need a long list of drugs... I just need ONE good one."   

I need one good drug that my cancer can't outsmart. With 2:1 odds of receiving the trial drug, I ended up in the control group. Ironically, I'm receiving the same chemotherapy my doctors recommended in the first place, but so far, eribulin seems to be a "good" chemo with manageable side effects. My biggest physical complaint is a nagging pain in my lower back, but hopefully next week's scan will prove the pain to be a result of picking up 32-pound Henry.

I'll admit, at first I was angry that I wasn't getting the trial drug, but I made peace with it by looking at the bigger picture. I need to do more than just wait for drugs to come down the pipeline, and since I don't have millions to donate to research, I'm offering up my services as a guinea pig. Even if I am in the control group, I'm helping get the job done.With any luck, PARP-inhibitor BMN-673 will be a wonder drug that hits the FDA fast-track.  

I'm very optimistic to see if the FDA's new breakthrough program is actually going to help us get drugs to market faster, because the new PARP inhibitors definitely qualify as a breakthrough. Now let's just cross our fingers and pray the drug will work some magic.  And maybe cross some toes too....In the meantime, summer has officially arrived here in Dallas! 

During the week, I'm juggling babysitters and appointments at the cancer center, but we enjoy our weekends as a family in the backyard. Most Saturdays we fire up the grill, turn on the sprinklers and let Henry run his lawn mower through the mud until he's tired enough to nap!

Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.

Calling all guinea pigs: My experience during a cancer clinical trial

advisory board member, to share her thoughts on advancements in blood cancers highlighted at the 2014 annual meeting of the American Society of Clinical Oncology.

Several years ago, I heard the early results of a new drug being studied in mantle cell lymphoma (MCL) and chronic lymphocytic leukemia (CLL). The drug (PCI-32765, an inhibitor of Bruton's tyrosine kinase) generated a lot of excitement, but might not have made it to the clinic.Like the stories behind Viagra and penicillin, the development of PCI-32765 is a classic example of scientists developing a compound for one thing and finding out, almost by accident, that it might be useful for something else. PCI-32765 was developed by a company called Celera engaged in the Human Genome Project as a tool to help find new drugs – not as a potential new drug itself, but the head of Celera resigned after the 2006 completion of sequencing the human genome and progress on their new drug portfolio ground to a halt.In 2007, Pharmacyclics acquired the intellectual property of Celera including PCI-32765, what was to later become "Imbruvica." PCI-32765 was not among the acquired compounds that was initially pursued; however, it took less than seven years for Imbruvica to enter the clinic for treatment of MCL (2013), and in February 2014, the FDA granted accelerated approval of Imbruvica for patients with previously treated CLL based on a small phase 2 trial that showed an impressive response rate in 48 heavily pretreated patients [

). To gain full approval from the FDA, these results need to be confirmed and shown to improve long-term outcomes in phase 3 trials. Seven trials are underway and the preliminary findings of one of them (a trial called RESONATE) were announced at the 2014 annual meeting of the American Society for Clinical Oncology.The 

trial compared Imbruvica to Arzerra (ofatumumab), another treatment for CLL. Patients with CLL that had relapsed following response to prior treatment or was refractory to treatment were randomized to daily oral Imbruvica or 12 doses of intravenous Arzerra. The goal of the trial was to determine if the 195 patients treated with Imbruvica had longer progression-free survival (PFS) than the 196 patients treated with Arzerra. The trial included patients with poor prognostic characteristics such as bulky disease (about half of the patients) and a third of patients had chromosome 17p deletions. The majority (86 percent) of patients on the Imbruvica regimen remain on therapy while all but one of the Arzerra patients had completed therapy. Of note, patients who progressed on Arzerra were allowed to cross over to the Imbruvica arm as of August 2013.The overall response rate was substantially higher for Imbruvica (48 percent) than for Arzerra (4 percent), and the gap was even larger if patients who had a partial response with lymphocytosis were included (63 percent vs. 4 percent). This is consistent with the phase 2 results. According to the investigators, more than 80 percent of the patients receiving Imbruvica are in remission at one year – more than twice the number expected from standard therapy. More importantly, patients who were treated with Imbruvica had significantly better PFS and overall survival compared with those who were treated with Arzerra. With Imbruvica, the risk of progressive disease or death decreased by 78 percent and 57 percent, respectively. The advantage in overall survival was seen despite patients receiving Imbruvica after progressing on Arzerra.Probably the most impressive result was that the data was positive in all subgroups, including disease that was refractory to fludarabine or had poor prognostic markers such as 17p deletions, both of which tend to limit the efficacy of traditional therapies.Both treatments were relatively safe and there were no unexpected toxicities. Diarrhea and mild infection were more common with Imbruvica. Serious infections were similar between the two treatments. Atrial fibrillation (a heart rhythm disorder) was more frequent with Imbruvica (10 patients versus 1 with Arzerra) but caused only treatment discontinuation. Bleeding was also more common with Imbruvica; however, there were no serious events. Infusion reactions and neuropathy were more common with Arzerra. These preliminary results suggest that Imbruvica will achieve full approval; but, final results of this and other phase 3 trials currently underway are needed to see if the impressive results seen in the earlier clinical trials hold up... so look for final data in 2015.

The story of a promising cancer treatment that was lost, then found again

advisory board member, to share her thoughts on advancements in lymphoma highlighted at the 2014 annual meeting of the American Society of Clinical Oncology.

Patients 60 years old and younger who have high-risk aggressive lymphoma (diffuse large B-cell lymphoma [DLBCL]) might not need a transplantation according to results of a phase 2 trial announced at the annual meeting of the American Society for Clinical Oncology.The trial (LNH 2007-3B), presented by the French GELA/LYSA group, assessed 222 patients'  response to chemoimmunotherapy, which was evaluated using  positron emission tomography (PET)  scans after two (PET2) and four (PET4) cycles of treatment. PET scanning results were used to drive the decision to continue chemoimmunotherapy versus autologous stem cell transplantation (ASCT) after four cycles of treatment. Previously, PET2-negative results had been associated with improved outcomes for patients with high-risk DLBCL, so investigators of the trial thought some patients might not need an ASCT. Patients on the study were randomized to receive chemoimmunotherapy with Rituxan/CHOP14 or Rituxan/ACVBP14. As expected, patients on the Rituxan/ACVBP14 regimen had a higher rate of serious toxicities, notably febrile neutropenia, infection and mucositis than patients on the Rituxan/CHOP14 regimen. Despite the difference in toxicities, the number of patients who withdrew from the trial early was similar between the arms (six on the Rituxan/ACVBP14 regimen and five on the Rituxan/CHOP14).Based on PET2 and PET4 scan results, there were three different consolidation treatment plans: • Patients with a PET4-positive result indicated that active disease was present and the patient was taken off study to receive salvage chemotherapy. Fewer patients on the Rituxan/ACVBP14 regimen received salvage therapy than on the Rituxan/CHOP14 regimen (27 percent and 39 percent, respectively). This difference was statistically meaningful and is consistent with the response advantage seen in lower-risk DLBCL.• Patients with a PET4-negative result, meaning they had a complete response to chemoimmunotherapy, were treated according to their PET2 scan result.      o Patients with PET4-negative but PET2-positive scans were treated with an ASCT, which resulted in a similar number of patients for each regimen:  41 percent for Rituxan/ACVBP versus 33 percent for Rituxan/CHOP.     o Patients who had both PET2- and PET4-negative scans received further chemoimmunotherapy and the numbers were similar for both regimens.  Overall, 25 percent of the patients in this study were eligible for this approach, sparing them from ASCT.So, what does this trial mean for patients in the U.S.? First, this phase 2 result is intriguing but requires further investigation before it is ready for the clinic. Second, one of the drugs in the ACVBP regimen is not available in the U.S.; however, despite the differences in numbers of patients with PET4-positive scans between the regimens, progression-free survival and overall survival were not statistically different. The investigators suggested that matching the PET response to an appropriate consolidation therapy might be responsible for the similar survival outcomes. Finally, using PET to assess response to initial therapy is currently the standard for DLBCL; but some worry about the potential risks of PET scans, notably false positives and second malignancies, particularly in a younger population (those 60 years old and younger).  In the case of high-risk DLBCL, biopsies are needed to confirm PET-positivity, and the benefits of PET outweigh the risks given the potential for long-term disease control. The GELA/LYSA investigators have started a phase 3 trial, called GAINED, to confirm these results.

ASCO: PET-driven therapy for aggressive lymphoma

The verdict is in: my scans show progression. My most recent regimen involved a hysterectomy and medicine that caused a mouth full of blisters, but it was not keeping my breast cancer at bay. Even though we've heard this news before, it always feels like someone pulled the rug out from under me. One might think I would mentally prepare myself for bad scan news, but I refuse to let cancer turn me into a pessimist. The truth is, I've been lucky in the more than two years since I was diagnosed metastatic. My body has responded to multiple drugs, at least for a little while; my most recent drug regimen is the first one that did not work for me at all.  As many of you know, the name of the metastatic game is "Time until Progression." It's not a matter of if my cancer will return, it's a matter of when. We're fortunate for the many drugs available to prolong our lives in stage 4, but there is no silver bullet yet.  And since there is no way to determine which drugs my cancer will respond to until after a round of trial and error, we live our lives in three month intervals between scans, analyzing every muscle pain and headache as a sign that the next scan might show progression.  People can see scan reports of NED (No evidence of Disease) for years, but NED can be a shifty and wiley character. I have had the pleasure of dancing with NED, but it wasn't for very long.We hang our hats on the hope that one day advanced cancer will really be a chronic, treatable disease like diabetes – that's the anecdote my doctors all tell me when I ask too many forward-thinking questions. I do believe we will get there in my lifetime, but until then, I will keep hitchhiking from one drug to another...searching for NED.In the past when my scan showed progression, my medical team laid out a very clear "gold standard" next step. This time we appear to be at a crossroads, because they offered me two paths and asked me to choose. Even though I have excellent medical teams in two top-rated cancer hospitals, it is up to me to drive this bus. Don't get me wrong – I am not advocating ignoring good medical advice, but our lives are at stake, and we need to act like it. Do your own homework, even if it means questioning the recommendations or seeking another opinion altogether.  We found a third option: a clinical trial. So after 14 days with no medication in my system, a barrage of baseline tests and scans, and a mountain of consent forms and questionnaires, I am officially enrolled in a phase 3 clinical trial for BMN-673, a PARP inhibitor designed for metastatic breast cancer patients with a BRCA1/2 genetic mutation. PARP inhibitors are part of the next generation of cancer drugs – they actually work with your DNA to fight cancer. On paper, it looks like the perfect trial for me. (You can read more on PARP inhibitors in "

.")My stats have been submitted for randomization, and I have 2:1 odds of receiving the oral trial drug or the standard care chemotherapy. I finally have my next step, and that's where we are, still searching for NED.  

Carrie welcomes your response and comments on CURE's 

Searching for NED

A trip to Las Vegas does not typically include discussions on career rights, fertility options and sexual dilemmas. It doesn't necessarily mean you will see a comedic speaker, who is also a published author with a PhD, talk of his personal struggles and major accomplishments. One might not expect to meet the CEO of an organization who has spent so much of his time and energy helping others and changing lives, and now changing mine. I can also say that one might not plan to share a connection with over 500 people one has never met before. But I did.Different people from all over the country, even from different countries, were joined together because of one commonality: Cancer. At my first 

, I was surrounded by fellow survivors. It didn't matter what people looked like, if they had hair or not or if they were in a wheelchair. It didn't matter what people needed to talk about, or what emotions they needed to express, no one was there to judge and everyone was there to support one another. I learned of outlets and resources that will help me and so many others in the future.Because of cancer, and the chemotherapy treatments I underwent, I have long-term side affects I deal with every day. Now I know I have someone to turn to and help when talking to my employers and co-workers about my disability. I met someone who can coach me in life and guide me in developing a plan for my future. Cancer will not hold me back, and I will live a better life.After a session just for women, I also learned I am not alone in my sexual experiences, struggles and realities, and even though I may have to face these obstacles, it is OK. I am unique and beautiful. This meeting opened my eyes to these things, and I am ever grateful.While some serious issues were discussed, a four-day trip to Vegas did not go without some relaxation and letting loose. I was able to bond with my roommates, even though we had never met before. We instantly felt as if we had been lifelong friends who were reuniting. There were others I formed such strong bonds with during the various event during the weekend. I want to keep in touch with them all, and I can't wait to see them again.Everyone I met at the conference helped me to realize it is OK to struggle and it is OK to ask for help. We can overcome anything. Cancer is seen as such a negative thing, as if nothing good can come from it. I would disagree, because during the OMG! Summit, cancer brought us all together. I have come away with meaningful relationships, resources that will support me in the future, and memories that I will treasure forever. 

Lindsay Braunwalder, 24, is a 14-year survivor of medulloblastoma and currently lives in Eagle, Idaho.

A trip to Vegas with Stupid Cancer

On April 15, 2009, I suddenly went from active to temporarily disabled as a result of my mastectomy and TRAM flap reconstructive surgery. I wasn't used to being benched and, as a wife and mother, I certainly wasn't used to putting my needs before others. But, breast cancer gave me no other choice and I was forced me to stop, breathe and take care of myself first.I was frustrated at times, but came to accept that healing was my job and it was impossible to heal without comfort.Now that I'm physically healed, it's much harder to prioritize comfort. In fact, sometimes I find myself resisting it because I want to throw myself back into daily life and push beyond my comfort zone.But, life is always going to require healing. And healing is always going to require comfort.No matter where you are with cancer, you need to make comfort a priority. Here's how to go about creating more comfort in your world:1. Concentrate on the little things that make you happy: Whether it's a favorite sweater, dog, yoga class, or driving with the top down, if it makes you happy, make sure to enjoy it more often. To get that done, start paying attention to what makes you smile. And then make the effort to bring those things into your life. You deserve it.2. Rest: Give in to fatigue. Initially, it speaks to you in whispers, but tends to scream like a banshee when ignored. To keep it from getting to that point, learn to shut down at a reasonable hour at the end of the day. Put a premium on rest and getting to sleep and you will be more productive in the long run.3. Make home a haven of comfort:  Every autumn and spring, I seasonalize my home. In autumn, I put out comfy throws in the family room, including a faux fur one I got from Pottery Barn. Sitting under that throw is one of my sweetest comforts when the wind is howling outside and I hate to see it go in the spring.4. Stay in touch: Keep communicating and sharing. While I was treating, I was immersed in support groups, therapy and events that put me in weekly contact with other cancer patients/survivors. Eventually, that came to an end. I still meet with other survivors by working with the Pathways Women's Cancer Teaching Project. And, of course, I stay in touch with the friends I made along the way. Their inclusion in my life is a constant comfort and source of support.5.  Maintain a soul practice: Whether you are part of a religious community, pray, meditate, or commune with nature, spend some time developing a soul practice. Take your practice one step further by creating a sacred space of peacefulness and healing at home, where you can take a moment to stop, breathe and find comfort anytime you need it.6. Finish this sentence: I find comfort in ------.  Write down whatever you think of without censoring yourself. When you're finished writing, review what you've written and think about how to bring those things into your life today. It's been said many times that life begins outside your comfort zone. I don't believe it. Comfort fortifies and heals and, without it, we don't have what it takes to venture out into the world and take risks.How do you do comfort? Let me know and I'd love to hear how you finished the sentence in tip number six. Make sure to tell me in the comments below.

How to Build an Amazing Life After Treatment

blogger. She is an inspirational speaker bringing hope to cancer survivors and the patient experience to medical professionals. Debbie gives back by working with the Cancer Hope Network, The Pathways Women's Cancer Teaching Project, and the Carol G. Simon Cancer Center Oncology Community Advisory Board at Overlook Medical Center, Summit, NJ. Debbie was honored to be quoted in 

Seeing Red: Coping with Anger During Cancer

. Debbie is a wife, mother, and a former very stressed out attorney. To learn more, join her at WhereWeGoNow and follow her on 

Six tips to help you comfort yourself & heal

Raise your hand if you're a cancer survivor. If you're reading this, you probably have an intimate relationship with the green-eyed monster, whether it's you or your loved one. During my first breast cancer diagnosis, I focused on the light at the end of the tunnel. I remember counting down weeks for recovering from surgery or chemotherapy, thinking it was the number of weeks until I got my old life back. You veterans are smiling right now; because once you've had cancer, your "old life" doesn't exist anymore. But hey, I was only 29 – I didn't know that yet!Now I am a 34-year old wife and mom living with metastatic breast cancer. I receive my day-to-day treatment in Dallas where I live, but I travel to MD Anderson in Houston every three months for a PET scan and reevaluation. We manage to make a family event of our trips to Houston, enjoying two nights in a hotel and exploring new restaurants. This trip, Chris and I left our son with his grandparents so we could also celebrate our five-year wedding anniversary with a nice Galveston hotel and a fancy dinner (without a nacho-throwing toddler!)In the two years since I was deemed incurable, I have tried to focus on living my life rather than the fear of it being taken away. Most days two-year-old Henry keeps me too busy to have idle hands and mind, but there are times even my "Pollyanna" mom can't help me ignore those dark thoughts.This would be one of those times.Today the fun is over. We have checked out of our nice hotel, and are on our way to the cancer center. In a few hours, I will receive the verdict of yesterday's scan. It all boils down to one simple, yet very complicated question: IS THE MEDICINE WORKING?My last scan said NO. So in the five months since, I started a new drug regimen, had a laparoscopic hysterectomy, had a brief hospital stay with pneumonia (supposedly not related to my cancer), and tweaked my dosage on multiple occasions to try and keep the crazy new side effects at bay. We also celebrated Henry's second birthday, my 34th birthday, traveled to Pensacola and Phoenix, and lived through a complete kitchen renovation. HA! When I write it all out...I am pretty much painting the picture of a crazy person! But remember what I said about idle hands and mind? I do like to keep busy.Last night as I lay in bed, I kept running through my checklist of new aches, pains and irritations and guessing whether they are attributed to the cancer, the medicine or the germs Henry brings home from Mother's Day Out. My itchy hands and annoying mouth sores are side effects, but is my cough from last month's cold or swollen lymph nodes? Is my trouble sleeping a side effect or just a touch of anxiety? What about my recurring headache? Medicine or cancer in my skull?If it's not a good scan, we will switch medicines again, and I will get a whole new list of side effects to manage. I will also cross one more off the very finite list of drugs available for my kind of cancer. At last count, I was one drug away from the chemo chair. (And darn it, my summer hair highlights look great!) But Pollyanna reminds me of what my doctors all say - new drugs are coming down the pipeline. If it is a good scan, I get to breathe a little easier this summer, at least until I'm back here for my next round of scanxiety. I approach today cautiously optimistic. I am hopeful for good news, but prepare myself for dealing with whatever may come. We'll spend the sobering four-hour drive back to Dallas wrapping our heads around it all and remembering to focus on how truly lucky we are, despite our challenges. Because there is an awesome little guy at home, impatiently waiting to see us.And like me, you'll just have to wait for the results. Here we go...

Scanxiety

Last July, I found myself frantically clutching the rails of the Liberty Island Ferry readying myself to exit. The waters of New York Harbor heaved angrily. The ferry lurched and the steel exit platform upon which I was expected to step, intimidated me as it violently banged up and down. I was a tourist, a rookie; the situation was completely foreign to me, and I felt scared. As my turn approached, the crewman yelled sternly, "Do not hesitate!" Seriously?!  My world is being rocked, literally, and you want me to move? My overwhelmed brain facing a sudden and tumultuous situation was happy to keep me right where I was.  All I saw were white caps and the hungry 6-inch steel teeth slamming between me and the pier.  Responding to the firm instruction, I did as told. I took a step forward not at all sure my foot would land where it was supposed to.  It did.  I flushed with relief. Mr. White Uniform was right. Back to work at the cancer center I chuckle to myself.  Talking with my patients, I am in essence hollering, "Do not hesitate!" At cancer diagnosis, people are battered in a tumultuous sea. And my words to them? "Move!" Seriously?! Yes. I wear a white uniform, and I am right. There exists a subtle underlying assumption that people with cancer are supposed to be miserable. Family members and healthcare providers alike, in well-meaning attempts to be supportive, inadvertently promote weakness, fragility and dependence by speaking urging words like "take it easy." Cancer is scary. Treatment can be brutal. Often people are miserable. Move? Me? Seriously?!  But I'm missing a lung, my skin is burned, my colon was just rerouted. Of course you're afraid to move! Perhaps no one on your care team is even encouraging you to move.  So you're stuck on the lurching ferry. The misery of cancer treatment is not a good place to hang out. It's time to move. Not only is it OK for you to exercise during cancer treatment, you should exercise during cancer treatment. Necessary post-operative restrictions have expiration dates and research clearly shows that exercise during chemotherapy and radiation is safe and reduces side effects such as fatigue, pain and weakness. Those facing a knee or shoulder surgery are ushered into rehabilitation.  You should be, too. Talk with your doctor or nurse about a prescription for cancer rehabilitation. We will help you take that step.Moving is living. Do not hesitate. Go take a walk. Your feet, and you, deserve to be on the solid ground of good health, even in the middle of cancer treatment. 

Do not hesitate!

I sit in a hotel conference room with 45 or so men, aged 20 to 50 or so. Some are in treatment right now, a few will be for the rest of their lives, and then there are a handful who were diagnosed a few decades ago, like me. Among the diverse diagnoses are men with testicular cancer, lymphomas, brain cancers, sarcomas and leukemias. And we seem to hail from all walks of life, an ex-steel worker with broad shoulders occupies a seat a few feet away from a doctor, there's an elite athlete who works for a tech startup next to a guy who works in a bowling alley. There's even a Hollywood actor in the mix. For the most part, we don't look ill and this could be a support group for anything. But it isn't anything, and this is an unusual meeting. I write this with some confidence after attending over 300 cancer-related conferences in the past 14 years.I've never sat in a room with this many young adults with cancer in one place, especially not men. And we are vocal. With virtually no prompting, we talk about body image issues, bouts with depression, anorexia and post-traumatic stress, when to "come out" to potential romantic or sexual partners, and applying the resilience found in cancer to our occupations. While a few of the comments are superficial, for the most part these men have come to work and compared with other early support groups I've witnessed as a young adult survivor/psychologist, the ratio of substance to the superficial is weighted heavily on substance.Perhaps equally surprising is the complete lack of machismo in the room. There's no posturing. I used to supervise group therapy run by psychiatry residents, and I was always grateful to have people who had been in alcoholics anonymous in the groups because they tend to cut through the superficial and focus on the issues quickly. This is what the room feels like. "I've wrestled with anorexia and body image issues," one guy says. Another talks about how the disease obliterated his medical training. Others talk about how they'd handicapped themselves, thought of themselves as flawed and unnecessarily dampened their own ambitions or romantic expectations. The group was one of many offerings at this past weekend's OMG! Conference sponsored by 

, a non-profit dedicated to young adults (women and men) diagnosed between ages 20 and 40. Over 450 young adults from around the country (and a few other countries) attended.When I was diagnosed, I knew one other guy, my age, who'd had cancer. He was terrific, but we spoke by phone only twice during my first year of treatment. The waiting rooms and chemotherapy suites where I was treated in Hartford was a 60s and up crowd. It was like dropping down in a creaky elevator shaft into a dangerous coalmine and only speaking to one other guy who had been down there. Even though I was diagnosed more than 25 years ago, the treatment environments for many, if not most young survivors, hasn't changed much. There are only a few centers nationwide that have young adult clinics. Perhaps this is why doctors are still not telling enough patients about fertility options, not referring us to clinicians who can address the body image and career fears we face, nor doing enough to help us navigate the long-term effects.So, young adult survivors are trying to step up and fill those gaps. There were group sessions on genomics, chemical exposure, advocacy, meditation, managing anger, healthcare reform, panels for specific disease, nutrition and living with metastatic disease, among others. And perhaps more important, there was fun: scavenger hunts, night club dancing, bowling night and pool parties.Perhaps the most remarkable aspect of the conference to me, having been active in the cancer community for 15 years or so, are the people who dedicate time and energy to this cause. Many of the activists are people who suffered when they were patients from a lack of access to other young survivors who might have helped them. Amber Vance, a young woman with Hodgkin's disease was never informed about fertility options when she was diagnosed and now dedicates significant time to getting young survivors together for meet-ups. Alli Ward, a main organizer of the conference, has lived through multiple relapses and gave a "Chronic Cancer" break-out session focused on living with metastatic disease. Jonny Imerman, a testicular cancer survivor, who has created an elaborate, national peer-to-peer mentorship program for young survivors based out of Chicago. And there were many more. There are camps, river trips, peer mentoring programs, fertility foundations, disease specific foundations and nutrition experts.I did a talk at the conference this past Sunday and that evening, a cascade of social media followed, there were 30 new Facebook friends, a gaggle of new Twitter followers and photographs dancing across the electronic ether. 

The cancer coalmine is still terrible. But going down now, with a lifeline to these volunteers and organized cancer warriors, would have been better. 

Dan Shapiro is a psychologist and chair of the Humanities Department at the Penn State College of Medicine.  He's written three books including, 

 "And In Health: A guide for couples facing cancer together." 

His writings about the patient experience and physician-patient communication have appeared in the 

New England Journal of Medicine, the New York Times, JAMA 

and he's been featured on National Public Radio's 

Young adults with cancer gather at OMG! conference in Las Vegas

Everyone has a stomach and is therefore at risk of getting stomach cancer. I was diagnosed with stage 4 incurable stomach (gastric) cancer in April 2008 when I was only 40 years old. At that time, I was a practicing attorney with my own firm, had three young children and my husband was a physician. I was given only weeks to live and I knew that only four percent of people live five years after this diagnosis. However, instead of accepting this news as a death sentence, I began the fight of my life! I shut down my law practice, had a port inserted and started getting heavy-duty chemo. I lost my hair, got neuropathy and was in bed for months on end. But I fought hard! My desire to be here for my kids was my first and foremost reason for my fight for survival. There were no resources available for stomach cancer patients and their families. During those months in bed, I realized that I wanted to raise awareness, provide education and support to others affected with stomach cancer, and advance funding for research.Thirteen months after my diagnosis, I founded Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit dedicated to raising awareness, advancing funding for research, and providing education and support internationally to patients, families and caregivers. Its ultimate goal is to make the cure for stomach cancer a reality. This drives me and my DDF Dream Team to help make an impact every day. DDF now has 20 chapters and helps patients all over the world.We are also making a big difference in advancing research funding. We held the Second Annual Debbie's Dream Foundation: Curing Stomach Cancer (DDF) Advocacy Day in Washington D.C., on Feb. 27. Fifty-seven DDF advocates from all over the United States and Canada participated in over 70 congressional meetings to raise awareness and to fight for increased funding for stomach cancer research. Advocates included patients, survivors, family members, caregivers, healthcare professionals, researchers and advocates who all shared their stories with congressional members and staffers about how stomach cancer has impacted their lives.Before our first Advocacy Day last year, nobody had been to the Hill to talk about stomach cancer, so it isn't getting the attention it deserves. The members and Hill staffers all told us last year that they didn't know stomach cancer was a problem and that no one had been to see them about stomach cancer. Debbie's Dream Foundation is changing the landscape for gastric cancer in the United States. It was an honor to meet with key legislators who are our champions in supporting increased funding for stomach cancer research.The next day, we held the first ever Congressional Capitol Hill Stomach Cancer Briefing in cooperation with Sen. Peter Roskam, the American Gastroenterological Association and the American Cancer Society Cancer Action Network. Speakers informed attendees that the sad fact is that little attention is given to gastric cancer and, per cancer death, stomach cancer receives less money than any other cancer. This is a shame because stomach cancer is the fifth most common cancer worldwide and the second leading cause of cancer death. 

Gastric cancer needs even more attention now because it is on the rise in young people in the United States ages 25-39 and we don't yet know why.

 Only research can tell us why. As we see from other cancer types, more funding equates to more research which equates to better overall survival and someday to a cure. Congress and the advocates will surely not forget these historic days.Stomach cancer patient, their families and caregivers should endeavor to educate themselves about this diagnosis, and I believe that they want to take charge of their health. DDF empowers patients to do that with our free educational symposium that we offer each year. Our 4th Annual Stomach Cancer Education Symposium occurs on Saturday, April 26 in Fort Lauderdale, Fla. Registration is required for both in person attendance and for our worldwide webcast. We also celebrate our accomplishments all year long as well as the organization's anniversary that evening at our Dream Makers Gala. For more information about the Symposium and Gala and to register, go to 

.Join me and my Dream Team in the fight!To learn how to let your elected official know how you feel about increasing funding for stomach cancer research, call us at 954-475-1200 or email your inquiries to admin@DebbiesDream.org.

Debbie Zelman is a stage 4 stomach cancer survivor and founder of Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research and providing education and support internationally to patients, families and caregivers. You can find more information at 

Making an impact for stomach cancer patients in D.C. and beyond

Living with cancer has forced me to know my limitations, even though it conflicts with my "can-do" personality. I simply can't be everything to everyone, and that's OK. So when fighting medication side effects and juggling doctor appointments, sometimes normal life tasks like folding laundry or running errands have to take a backseat.

When I take Henry to Mother's Day Out two days a week, most of the moms there are dressed for busy days filled with yoga and lunch dates. Me? Well, I'm either dressed to go downtown for a doctor's appointment, or I look like I just rolled out of bed, threw on some clothes and let my kid eat a PB&J for breakfast in the car. Last week Henry needed an Easter basket for his classroom Easter egg hunt. Since anything he gets his hands on will be thrown, kicked, filled with dirt and possibly even chewed on, I picked out what I thought was the perfect Easter basket for the two-year old wild man: a plastic bucket with a picture of a yellow chic on the side. Then I held my head high as I placed his bucket on the table next to all the fancy pink and white gingham fabric-lined Easter baskets... apparently I was the only mom in his class who ran to the dollar store to cross that to-do item off her list!Before I was diagnosed with stage four breast cancer, I was able to "power thru" when I was tired or not feeling my best. But that's just not the case anymore, and now if I overdo it, I suffer from what we call, "hitting the wall," because my body will quite literally STOP. Energy has become my most valuable commodity, and the more I spend running all over town searching for the perfect school bag, the less I have to spend with the people I love. Do you think Henry cares if his school bag has his name handwritten in black marker instead of monogrammed with cute letters? Because I KNOW he cares when Mom is too tired to play cars with him on the dining room floor!Even though my pride hates to admit it, I have officially removed myself from the Super Mom competition. Because when I have to choose between spending time with my two favorite guys or looking like the mom who has it all together, my guys will win every time. So if you see me in the grocery store, and Henry's wearing his reindeer pajamas in April because it was the last clean shirt in his drawer, don't judge until after you see the big grin on his face. He may not have Super Mom, but he is one happy kid. And that's all that matters to me.

The importance of reindeer pajamas

When I hear women in the locker room at the gym curse the day because of a broken nail or a parking ticket, I can't help but get sassy with them. "Let me get this straight," I might say, pointing at my chest where two perfectly formed breasts used to reside pre-double mastectomy. "I'm flat as a pancake, have chemo brain until noon, and my eye brows never grew back, but do you hear me complaining?" "We don't know how you do it," they sigh, shaking their heads with a mixture of pity and ...well, pity. This is what kills me. That "civilians" – that's what my friend and fellow survivor, Noreen, calls the uninitiated – act like cancer survivors have a real choice in the matter. Like choosing the paint color for our car from the factory or selecting a new dish washer from Sears."Chutzpah!" I declare with a winning smile, "That's how I do it; chutzpah and good medicine keep me putting one foot in front of the other."In spring 2004, I didn't think I had many steps left after a routine mammogram failed to detect a tumor the size of a golf ball. Thankfully, I noticed a change to the areola of my right breast a month later and quickly called my PCP. A biopsy confirmed my darkest fear but the prognosis after surgery was far worse. Cancer had spread to my lymph nodes. That, coupled with the size of the tumor and my relatively young age – I had just turned 45 - lead my surgeon to determine that I had very aggressive breast cancer. Very apologetic, he predicted I had a 75 percent chance of dying within three years. I could feel the cancer goblins dancing on my grave within three minutes. But then a funny thing happened on my way to the afterlife. I met my oncologist the following week for the first time, and she gave me a healthy dose of the medicine I needed most: hope. "I'm so excited to work with you," she said beaming, "with all the amazing treatments today for advanced estrogen receptor-positive breast cancer, you have a 25 percent chance or better of beating it."With a "how do you do?" like that, I became 100 percent convinced that the odds were in my favor. I kicked kicking the bucket, truly excited for all the summer adventures that lay ahead with my husband and our two young daughters. Whether camping on the lake or camping out at the infusion center ingesting "cocktails" so exotic my hair fell out, my oncologist helped me see that it wasn't enough to merely accept treatment. I wasn't a criminal resigned to serving my sentence. Quite the opposite, I saw myself as an eager and enterprising foreman, overseeing the biggest restoration project in my life, way bigger than remodeling our kitchen a few years prior. Cancer treatment or kitchen remodeling, if you don't have the right tools and know how to use them, chances are slim you'll get the results you wanted. Survival is still an adventure all these years later, one that wouldn't be possible without continued pharmaceutical research and the dedication and encouragement of my oncology team. After an initial five-year course of the oral aromatase inhibitor, Letrozole, following chemotherapy and radiation, I recently completed an additional five years in a double-blind trial to determine if extended use of Letrozole gives added benefit. I won't find out the results until 2015 but, regardless, being part of such an important study in the fight against breast cancer recurrence has been an easy pill to swallow.

Carolyn Choate was diagnosed with stage 3B invasive lobular carcinoma more than 10 years ago. She is a long-time TV producer and on-air talent for WYCN in New Hampshire. A dedicated "coach potato" before cancer, Carolyn has since participated in the SheROX triathlon, is an avid kayaker with her daughters, and most recently rode her bike solo from Boston to Montreal to raise money for Rotary International's "End Polio Now" campaign. She is currently working on a memoir, 

Good medicine

At age 26, I was on my own, self-sufficient, secure and independent. I was already a few years into building my career as an adolescent therapist; a job that well suited me. I had my own apartment, and was about to move in with my boyfriend of several years. I took care of myself physically and emotionally. Life was pretty perfect, until the routine trip to the gynecologist that wound up saving my life. When you hear the words, "you have cancer," there is truly no way to be prepared to absorb all that comes with it. My now unstable life became filled with terms like prognosis, oncologist, surgery, treatment and chemo. My doctors overwhelmed me with choices about what course of action to take. Suddenly, my secure sense of self became unraveled and presented me with a new identity – cancer patient. My oncologists' (who are wonderful) main goal was to rid me of cancer as quickly as possible. The recommended course of action when diagnosed with ovarian cancer is to have a complete hysterectomy. Being only 26, the idea of parenthood wasn't even on my radar yet. But suddenly I felt forced to think about my fertility and my options. I was then hit with a double whammy: the idea that my cancer might render me infertile. I stressed to my doctors that while clearly the primary focus is to rid myself of cancer; I wanted them to make every attempt at preserving my fertility.Over the course of seven months, I endured three surgeries and six rounds of chemotherapy. The treatment took my hair, put my body in menopause, and left me feeling twice my age. Unfortunately, the doctors weren't able to save my ovaries. I recovered and slowly acclimated to my new normal – survivor. As I moved further away from my date of diagnosis, I became more accepting of my life as a survivor and it became less scary to invest in the idea of leading a longer, healthy life. My then boyfriend and I were married in 2005, and after several years were comfortable exploring the idea of having a family. I had come to terms with the loss of my fertility and began exploring my options to become a parent. I reached out to my oncologist and my supports in the cancer community about surrogacy and adoption. I feared that with adoption, I might be discriminated against due to my cancer history and therefore it felt safer to me to explore the world of surrogacy. I also liked the idea that though our child might not be genetically mine; they could still be connected to my husband. As we researched, it quickly became apparent that there was a lack of information about surrogacy. We met with a few agencies and decided on Circle Surrogacy in guiding us through this process. We signed our contract with them and moved on to the matching process. Within four months of meeting our surrogate, we were expecting our son. The entire experience felt "right," as I believe this is the way we were intended to become a family. Our surrogate is truly an amazing woman, who we felt connected to from the start. Going into the experience, I had some anxiety about feeling envious or jealousy toward our surrogate as she was able to bring our child into this world; something that I couldn't do. I remember feeling surprised that I didn't feel this way toward her at all. As we were awaiting the arrival of our son, I felt humbled and grateful that she was doing this for us. The day our son was born was truly the most amazing day of my life. It was as if all the struggle, loss and upset caused by cancer had been undone, or perhaps more so, solidified the reason for the journey. As I reflected on the experience, I remained troubled by the idea that there was little information in the cancer community about surrogacy. I began exploring ways to get information about this amazing way to become a parent after cancer to survivors. I am fortunate to have made this a career goal and work now as an outreach coordinator to educate others about surrogacy. Though being a cancer survivor is membership to a club I never wanted; I wouldn't say that cancer was the worst thing that happened to me. How could that be when it has brought so much to my life both personally and professionally? 

Jen Rachman is a social worker from New York City. She is a 10-year ovarian cancer survivor having been diagnosed at age 26 and a parent through surrogacy. She is currently working as an outreach coordinator for Circle Surrogacy to educate survivors about this family building option after cancer.

The other option: Surrogacy after cancer

Life has changed a lot for me since nominating my nurse, Tish Mullen, who became a finalist in the first Extraordinary Healer Award contest in 2007. From my essay, "

"...I was extremely sick and in the hospital for most of the second semester of my senior year of high school. Well, when prom came around, it was really touch-and-go whether I would be in the hospital or not. Because of Tish, I was not in the hospital, got to attend prom, stayed out late, and all of this without my ever-present I.V. backpack. This was quite a feat!

She came over right before I got ready and removed my I.V. and I.V. backpack as part of getting ready (sort of a substitute for doing my hair since there was none). I put on my flowing royal blue gown and was whisked off as a princess for the evening--putting the fact that I was going into an intense life-threatening stem cell transplant in a week in the back of my mind.

At about 4 in the morning, I arrived home from the after-festivities and called Tish, as I had been instructed to do. She came over and safely put the I.V. back in like it had never left.

This is a small example of the type of person Tish is--caring, selfless, and trying to help pediatric oncology patients with all of her resources..."

After the Extraordinary Healer contest, Tish did another overly generous thing for me.  She transformed my mother's wedding dress into a custom dress for my wedding! This year, I am celebrating my six-year anniversary with Gabe Lozano, the man I took as my date to that awards ceremony in 2007. I am also very excited to celebrate 10 years this May with no evidence of cancer. I'm still deciding how I may want to honor this milestone. Last year, I completed a dual master's program in art therapy and counseling. I achieved my goal of becoming an art therapist, inspired by a woman who was my therapist during my cancer treatment. It was a long road as I had been in treatment on and off for so many years. Recently, I began working in a residential facility for children and teens dealing with emotional and behavioral issues. The children inspire me so much every day, and I feel blessed to be there.Combining my love for art therapy with helping others with cancer has led me to the opportunity of facilitating workshops for adults and children with cancer using art as the means of expression. I'm now helping plan a local young adult conference for people living with cancer this summer and will lead a session on art therapy.  I have continued to do inspirational speaking, which has taken me around the country and even to Europe. I have enjoyed meeting amazing people through all these experiences.Although I still deal with many long-term side effects, I make the most of it, as I'd rather deal with them than the alternative. I'm even challenging myself to train with a program called Cancer to 5K to see how much I can push my body. It seems that if I'm busy with life, then I don't have much time to think about the lingering side effects.As I reflect back on my experiences with 

Extraordinary Healer contest, getting the chance to honor such an amazing nurse who did so much for me has definitely been a highlight in my journey. I continue to see Tish occasionally, and she continues making the lives of children with cancer better and brighter. I hope to be more like her!

Rachel Lozano is an art therapist, artist and inspirational speaker. She is a three-time young adult survivor of Askin's tumor. Statistically, she had a 0 percent chance of survival the third time, but in May will celebrate 10 years of no sign of cancer. Feel free to contact her through her Facebook page, 

So much to celebrate

When I was first diagnosed with breast cancer at age 29, doctors immediately sent me for genetic testing. We learned that even though I had no significant family history of cancer, I had inherited a genetic mutation from my dad's family, giving me more than a 50 percent chance of getting breast cancer in my lifetime. Unfortunately, I did not know about my BRCA2 status 

finding a lump in my breast, since a prophylactic mastectomy could have significantly reduced my chances of getting breast cancer.As a young woman with breast cancer, there have been times when I can't decide if I feel more like a pariah or a celebrity. Now that I am stage 4 and living with cancer (a concept even I can't wrap my head around sometimes), there are days when I struggle to be a normal person – a wife, mom, friend, daughter, sister ... not the poster child for "young women get breast cancer too." Although it is an important message to broadcast.I refuse to think there is a "master plan" reason for me getting cancer, but I do know some good things have happened as a result of it. The only way I know how to make sense of my roller coaster life, is to hope my journey positively impacts other people.   I witnessed one of those impacts just yesterday when I received a text from my friend Jennifer, saying, "You are more of an inspiration than you know."  My mom and I met Jennifer a few years ago at the Susan G. Komen 3-Day for the Cure in Dallas. With 60 miles of walking and talking, we quickly learned Jennifer was walking for her mom who had recently passed away from breast cancer. By the end of the three days, Jennifer had heard all about me and my breast cancer – and my increased risk as a result of a genetic mutation.    Over the next few years, Jennifer and I kept in touch. She met with my breast surgeon and underwent genetic counseling. She too, tested positive for a BRCA mutation, but without a cancer diagnosis, she had to face the tough question: now what? The last time I saw her, I had to break the news that my cancer had returned and is now stage 4.  Her text this week was to tell me she had scheduled a double mastectomy.  It's silly to think of myself as an inspiration because I don't feel like I have done or accomplished anything significant, but I do take comfort in knowing I have inspired her to take control of her own health. For those people who may not believe prophylactic surgery is the way to go – take a look at Jennifer's two little guys: don't you think they want their mommy to see them grow up? I know Henry does, and that's what gets me out of bed every day, fighting the good fight.  In a few months I will take part in a clinical study to look for additional biomarkers like BRCA; because the more we know about my cancer, the better equipped we will be to fight it. Congratulations to my friend Jennifer, for doing everything in her power to fight cancer.  I hope we continue making genetic discoveries that can empower other people to do the same.

Spreading the word about BRCA

The most satisfying aspect of my job is when I meet a patient who is suffering from a rare disease that until very recently was untreatable, but which today can be treated with a newly-approved medication. Last May, at my organization's annual dinner, we invited four patients to come to the podium to discuss their diseases. They then made presented awards to the presidents of the companies that had developed a new drug already being used to treat their disease. I saw tears come to the eyes of the people attending the dinner. We all know one or more people who are alive today because of the remarkable medical advances made very recently. This includes the many new treatments for both rare and more common cancers. The latest report from the American Cancer Society noted that between 1991 and 2010, there was a 20 percent decline in the overall death rate from cancer. The organization that I head, the National Organization for Rare Disorders (NORD), focuses on patients with a rare disease, which is defined as a disease that affects 200,000 or fewer patients in the U.S. Many rare diseases are cancer, and as we learn more about cancer, more and more will be classified as "rare."This week is a special week for all patients with a rare disease, as Friday, Feb. 28, is commemorated around the world as Rare Disease Day.

We designate the last day in February as Rare Disease Day because every four years, when there is a leap year, the last day of the month is February 29. It truly is the rarest date on the calendar. 

This year, my thoughts turn to the remarkable progress we are making in developing new treatments. Cancer research is especially exciting. Cancer immunotherapy – using the body's own immune system to fight cancers – promises to lead to new therapies for solid tumor conditions such as melanoma, non-small cell lung cancer and bladder cancer.At NORD, we rededicate ourselves this week to the tasks that are especially critical for the 30 million Americans with a rare disease. Five tasks stand out:1. Supporting research for rare diseases, including cancers that are rare.  It is ironic that we are on the cusp of so many scientific advances, at a time when the research dollars are becoming scarcer. At NORD, our goal is to support the federal and private commitment to medical research.2. Enhancing the capability of physicians to diagnose rare diseases. Most physicians have little experience in diagnosing a rare disease, some of which affect a handful of people. For many diseases, it can take half a dozen years, or more, before an accurate diagnosis is made. At NORD, we support systems that provide broader education for physicians in enabling them to diagnose rare diseases more quickly and with greater accuracy.3. Expediting clinical trials. Testing new treatments is always time consuming, especially when little is known about a disease, and when there are few patients to test.  At NORD we are committed to increasing our knowledge about how a rare disease naturally progresses, with no intervention or with existing interventions, because we can then more easily assess the effectiveness of a new treatment. And we also have established networks of patients with rare diseases so that recruitment for clinical trials can be expedited.   4. Expediting new drug approvals. We are fortunate to have officials at the FDA who understand that, sometimes, it is not feasible to test a new treatment for a rare disease the same way that a treatment for a common disease would be tested. The FDA has demonstrated great flexibility in assessing new treatments for rare diseases, and we at NORD support that spirit.5. Assuring access to new treatments. Our health care delivery and reimbursement systems are changing.  There are more patients entering the system, and better and more expensive treatments are being developed. At NORD, we can committed to working with insurers -federal, state and private – to assure that new treatments become available in a timely way. At NORD we also pioneered patient assistance programs that enable patients  in need to receive the support they need. One more thought as we commemorate Rare Disease Day, and that has to do with the new empowerment of the patient. We are seeing more and more personalized drugs – drugs that are created for an individual patient. As personalized medicine becomes a reality, patient involvement in the development process becomes ever more important. The word that I use is "patient-centricity." We at NORD are committed to making the patient the center of the health care system.I hope that everyone who is concerned about medical advances – and that should be every one of us – takes a few minutes this Friday to think about Rare Disease Day, and about the progress we have made, the progress we are making, and the challenges that remain.Peter L. Saltonstall is the president and CEO of the National Organization for Rare Disorders (NORD), a nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD at 

Today is Rare Disease Day

Since my diagnosis in 1994 of a rare, incurable condition--medullary thyroid carcinoma--I've searched for an effective treatment. After three neck operations and chemotherapy did little to check my cancer's spread, I entered a drug trial at Fletcher Allen Health Care in Vermont. The oncologist running the experiment was Dr. Steven Grunberg, who took me under his wing. Despite my aggressive disease, he reassured me with quiet confidence. We're going to help you stick around, he said.Today, thanks to Dr. Grunberg and his staff, I'm still here. But Dr. Grunberg isn't. He died of lung cancer in September. It's a painful irony I'm still sorting through.By the time I found Dr. Grunberg five years ago, my cancer had spread to my lungs. I was growing desperate. In my mid-40s, with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through the 

.One day I clicked to the clinical trials page of the National Institutes of Health, and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, is a tyrosine kinase inhibitor. Basically it works to block proteins that tell tumors to grow.Vermont's Fletcher Allen Health Care was among the study sites. One weekday morning I drove three hours from my Clifton Park, N.Y., home to Burlington, Vt., to meet Dr. Grunberg and get the ball rolling. Though untested drugs can be risky, he quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he'd keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug--but one-third received a placebo. Neither doctor nor patient knew which one patients had. I could be left without a life preserver.By my next appointment, three months later, my levels of calcitonin--a hormone stimulated by my cancer--crashed to 10,000 from over 100,000 before the trial. It was apparent I was among the lucky two-thirds of patients. The drug was working! Dr. Grunberg wasn't one to show a lot of emotion with me, but he shared an enthusiastic  smile when he told me the good news. I immediately called my wife to tell her, and drove back to New York that afternoon, my heart singing with hope for my future.Over the next five years I visited Fletcher Allen every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT scans and bloodwork -- and to feel supported by Dr. Grunberg and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what Dr. Grunberg was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.He was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter's creative pursuits. I emailed him several of my short stories, and he always took time to send me a complimentary email back. I considered him a friend.The drug kept my condition at bay, and as a result of the trial was approved as Caprelsa by the Food and Drug Administration for use against my cancer. Today thousands of patients like me can now benefit from work by Dr. Grunberg and other study researchers.The last time I saw Dr. Grunberg was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic--his hair as thick and dark as ever. He gave zero hint he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited Fletcher Allen again in summer I received the odd news he'd taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn't until I visited again this fall when his staff told me Dr. Grunberg had died of lung cancer.I was stunned. But he didn't seem sick, I insisted. He kept working right up until the end. That's when it hit me: he didn't want his patients to know their doctor was dying of the same condition they hoped to beat. Dr. Grunberg didn't want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world--my world--is poorer without him.When I revisit Fletcher Allen for my next appointment in January, I'll see another oncologist who has replaced Dr. Grunberg on the trial I'd entered. She's a smart, caring doctor, and I recognize signs of selflessness in her as well, because I now have a standard against which to measure people's worth. Because Dr. Grunberg gave me a new lease on life, even as his own lease expired.

David Kalish is a survivor of medullary thyroid carcinoma and the author of the comedic novel, 

, which inspired this essay and will be published this spring. You can read more at 

In memory of my oncologist

We call them survivors for a reason. They inspire. They give us hope. They bestow upon future survivors the courage to face the darkest of times. They remind those of us who fight against cancer that our efforts are not in vain...that victories are sometimes won and lives saved. But for those who have faced death and conquered the disease, what now?Life after cancer is different. The truth is survivorship experiences vary as greatly as the individual battles with cancer itself; but for many, survivorship may include a lifetime of struggles. Regardless of the type of cancer faced, many of these challenges revolve around oral health. One of the most common side effects of chemotherapy and radiation treatment to the head or neck is severe dry mouth. For many, especially those who have survived oral and head and neck cancer, the impact of this condition is long-term and debilitating. Beyond just the discomfort, severe dry mouth can cause rampant dental decay, frequent oral infections and difficulty in chewing and swallowing. This, in itself, can lead to poor nutritional intake. For those survivors whose treatment included head or neck radiation, limited opening of the mouth, known as trismus, can make eating a difficult task and oral hygiene burdensome. Oral and head and neck cancer survivors also face unwanted oral health issues with the possibility of rapidly advancing periodontal disease (gum disease), burning mouth syndrome, and osteonecrosis, an occurrence of dead bone which becomes exposed through the gum tissue and is often painful and can lead to systemic infection.It's not just those with oral and head and neck cancer who face oral health issues related to cancer care. Those treated with intravenous bisphosphonate drugs for multiple myeloma and metastatic bone disease have a similar risk for the development of osteonecrosis of the jaw.Bisphosphonates are excellent drugs that have a definitive place in treatment regimens, but their effect on the bone remains for decades. Those survivors whose treatment has included intravenous bisphosphonates must be certain their dentist knows their medical history and is familiar with the risks associated with this class of medications. Survivors who continue to take maintenance medications often continue to experience issues with dry mouth. While dry mouth may not be as severe as during cancer therapy, the decreased salivary flow is often enough to increase the risk of rampant dental caries and intraoral infections.Some of the challenges faced by survivors go well beyond health issues. Social and psychological changes are not uncommon. For the oral and head and neck cancer survivor, eating in a restaurant may be so great a chore that what was once a pleasant outing is avoided because of sensitivity to foods or inability to properly swallowing. Frequent choking or eating slowly makes the survivor self-conscious in a public setting. For survivors with cancer that has left them scarred with physical changes, psychological and emotional scars often take much longer to heal. Whether it is the head and neck cancer survivors acceptance of a reconstructed face, adjustment to a new body image for the breast cancer survivor, or the prostate cancer survivor's struggle with urinary incontinence, the challenges of survivorship are very real and a means of support and coping must be realized and valued.As more healthcare providers prioritize the importance of providing services to cancer survivors, it is my hope that we will see more emphasis placed on meeting the physical, emotional and spiritual health of this special group of individuals. Survivorship issues transcend the perceived barriers between medicine and dentistry and mental health and social work. This is an appropriate cause for healthcare professionals from all walks and specialties to come together for the betterment of those who were once our patients and are now survivors!

Dennis M. Abbott, DDS, is the founder and CEO of 

, an oral medicine practice dedicated to care for the unique dental and oral health needs of individuals battling cancer.

Surviving oral and head and neck cancer: The new normal

One of the many unfortunate things about having a rare tumor was that for some time no one was certain what it was. In fact, I was misdiagnosed a couple of times. The first surgeon that I came in contact with believed it to be esthesioneuroblastoma, which is quite rare. It has affected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.His plan was to do surgery. I had my first CT scan on a Friday and he wanted to do surgery the following Tuesday. He said he couldn't do a biopsy beforehand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. To sum up: This man, who was very nice by the way, and who happens to be a surgeon, said he could remove the tumor. It sounded good to me. My family flew in the next day and put the kibosh on that plan. At first I argued with them. I wanted this tumor out of my head, and there is a man (who went to medical school) who says he can do the task, so why not let him.While I was lying in the ICU that weekend, my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents and siblings they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose. 	I'll admit that after the biopsy, things became fuzzy for me. While the doctors convened on my case and treatment, my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember the majority of things that happened in this time. I was finally hospitalized at the university hospital, and I began my first chemotherapy treatment. It was a 96-hour infusion of taxol, cisplatin and 5-FU. Nurses practically wore haz-mat suits while administering these toxins into my veins. After my treatment, a couple weeks later, I started to feel better. A nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told the nurse it was esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right?""It's not?""No. Don't you remember the doctor giving you the results of the biopsy in the hospital?""He did?" Like I said before, things got fuzzy. I didn't even retain important information. "What do I have?" I asked."Sinonasal undifferentiated carcinoma," she told me."Huh." I paused. "Is that better?" I asked with a ray of hope.She shrunk in her chair. "No." It turns out it was a more aggressive tumor. Instead of growing in five years, it grew in five months. It was also more rare, affecting 400 instead of 800, and it was classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was. After six chemotherapy treatments and more than six weeks of radiation therapy, the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with sinonasal teratocarcinosarcoma. When my surgeon told me the new diagnosis, I again asked, "Is that better?""No." Instead of being 1 in 400, I am now 1 in maybe 50-80 people in the world that have ever had it. It is highly aggressive and rare, and now we know that it is a polymorphic cancer, meaning it can affect and travel through blood, tissue and bone. In fact, part of the tumor had actually calcified and turned into bone--and you thought it couldn't get weirder.Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take into a gun fight.Being diagnosed with a rare cancer can be frustrating because there is not as much information out there on rare diseases. The study groups are small, so the statistics often sound very bleak. When I was looking into sinonasal teratocarcinosarcoma I was reading statistics like 'in a study group of 11 people, 8 died within 1 year. Of those who survived, 70% died within 5 years.' This was not encouraging information. The support is not the same for those with rare cancers. The lack of support can be as small as not having our own color for a wrist band, and as large as minimal funding for research. There are no official parades, marathons or fundraisers for sinonasal teratocarcinosarcoma or the many other rare cancers out there. If you want those things for rare cancers you have to do it yourself. Sometimes that can make a person feel alone. Everyone deals with trauma differently. For me I found that the best medicine was laughter. I found something to laugh about every day, and the amazing thing about laughter is that it is contagious. Others around us would open up more freely, and I have even made some lasting friendships from the waiting rooms in the cancer center. When you have a good attitude, you inspire other to do the same. Before you know it you won't feel so alone any more.

Becky Busch was diagnosed with a rare and aggressive cancer several years ago. Since surviving it, she has rediscovered her passion for writing. Among other things, she writes a blog about herself and her own battle with cancer at 