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CATEGORIES [ CHILDHOOD CANCERS ]

A journey from neuroblastoma to ambassador

BY GUEST BLOGGER | SEPTEMBER 16, 2014

Lauren Bendesky, guest CURE blogger
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 blog 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 St. Baldrick's Foundation, the largest funder of pediatric cancer research grants besides the United States government, to serve as one of its five 2014 St. Baldrick's Ambassadors. 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 childhood cancer research. 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.

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CATEGORIES [ CHILDHOOD CANCERS ]

Going the distance for cures: National Childhood Cancer Awareness Month

BY GUEST BLOGGER | SEPTEMBER 15, 2014

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 AlexsMillionMile.org.

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.

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CATEGORIES [ FEATURED ]

Tears in the second row

BY GUEST BLOGGER | SEPTEMBER 10, 2014

Leslie Waltke, guest CURE blogger
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.

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CATEGORIES [ BLOOD CANCERS ]

LEAPing into lymphoma advocacy

BY GUEST BLOGGER | SEPTEMBER 4, 2014

Robin Levy

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 lymphoma.org/LEAP.

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.

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CATEGORIES [ YOUNG ADULTS ]

Older is better

BY GUEST BLOGGER | AUGUST 18, 2014

Jennifer Nassar

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.

Andrew Tomasello

Andrew Tomasello

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.

Dr. Wittig and Andrew Tomasello

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 #Andrews22. He admits that he, at first, was in denial about getting older, but now he embraces it.

Can cancer be glamorized?

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 video 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.
3) Watch plenty of Netflix.

Andrew

Jennifer Nassar is the senior editorial intern at CURE magazine. She is a second-year graduate student at the University of North Texas and a 2013 graduate of the University of Mississippi.

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CATEGORIES [ SKIN CANCER ]

Shedding light on sun protection: Separating sunscreen facts from fiction

BY GUEST BLOGGER | AUGUST 11, 2014

Shannon Trotter

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.

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CATEGORIES [ FEATURED ]

Facebook Chat recap Living with neuropathy

BY GUEST BLOGGER | JULY 17, 2014

On July 9, CURE 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 CURE's 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 here 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 Events page.

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

Q: CURE magazine 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?

Pam Shlemon 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.

Q: Kris 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?

Kathy LaTour, CURE 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.

Q: Janet 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?

Michael Stubblefield 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.

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

Pam Shlemon 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

Q: Robina Will acupunture help?

Pam Shlemon 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.

Q: Bill Can radiation cause neuropathy?

Michael Stubblefield 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.

Q: CURE magazine 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?

Michael Stubblefield 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.

Q: CURE magazine What types of integrative therapies are worth trying for patients with neuropathy?

Pam Shlemon 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:
• 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.
• 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.
• 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.
•Energy 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).

Q: Mike 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.

Michael Stubblefield 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.

Q: Can you reduce your risk?

Pam Shlemon 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

Q: Beth 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?

Michael Stubblefield 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.

Kathy LaTour, CURE 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.

Q: Peter 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?

Pam Shlemon 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.

Q: Melva 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?

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

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

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

Michael Stubblefield 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.

Q: Rick Can you please provide further information on physical therapy?

Michael Stubblefield 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.

Robb 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.

Robb 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.

Q: C McAllister 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 CURE....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.

Kathy LaTour, CURE 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.

C McAllister 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!

Michael Stubblefield 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.

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

Michael Stubblefield 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.

Michael Stubblefield 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.

Pam Shlemon 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.

Michael Stubblefield 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 JAMA 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.

CURE magazine 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!

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CATEGORIES [ YOUNG ADULTS ]

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

BY GUEST BLOGGER | JULY 11, 2014

Jennifer Nassar

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.

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CATEGORIES [ NEWS ]

Better late than never won’t be the same again

BY GUEST BLOGGER | JULY 11, 2014

Jennifer Nassar

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 CURE magazine.

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CATEGORIES [ YOUNG ADULTS ]

Does cancer equal love?

BY GUEST BLOGGER | JUNE 26, 2014

Jennifer Nassar
CURE's 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 CURE. You can read more here.

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?

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

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