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CATEGORIES [ BLOOD CANCERS ]

Myeloproliferative neoplasm heroes honored

BY KATHY LATOUR | JULY 22, 2014

Kathy LaTour blog image

One of my favorite things about what we do at CURE is to honor those who help behind the scenes to support and educate patients and their families and friends. Every year we hold the Extraordinary Healer award to honor a nurse who goes above and beyond, and last year we added a new award event where we honor eight heroes who have served those with myeloproliferative neoplasms (MPNs).

While MPNs are not seen as cancer because they don't act like malignancies, MPN patients and those who have rare cancers share in many of the side effects of treatment and possible early mortality, as well as the lack of information and support for what they are experiencing.

Those suffering from this family of blood disorders not only have a complicated name to remember but also a complicated definition for one of eight types of neoplasms included in the MPN category. Within the eight, three of the neoplasms are related to a gene that produces a protein that impacts the growth of the conditions. Sometimes called the "classic" MPNs, these three are Polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis (PMF).

Those with PV have an excess of oxygen-carrying red blood cells, often accompanied by an elevated platelet count that could result in life threatening blood clots. ET is driven by an overproduction of platelets, which can slow the flow of blood and increase an individual's risk of clotting. PMF develops when the blood stem cells fail to mature properly, resulting in decreased levels of red blood cells, white blood cells and platelets. This eventually results in a scarring effect in the bone marrow impacting the marrows ability to form new cells.

Nearly 300,000 Americans live with one of these classic MPNs, and, because they are rare, those who can provide help and support to the newly diagnosed have become increasingly important.

Last year in conjunction with Incyte, CURE recognized eight MPN Heroes, patients and healthcare professionals who have committed to these diseases either personally or professionally. The MPN Heroes were recognized for either their individual commitment to patients by providing guidance, education or support above and beyond, or a broader commitment to the MPN community, meaning leadership in developing services and programs addressing the needs of MPN patients their families, friends, caregivers and medical professionals.

This year eight MPN Heroes will again be honored and CURE is collecting nominations now until September 12, 2014. So, if you know of someone who has made a difference in the lives of those with MPNs now is the time to nominate them as an MPN hero.

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CATEGORIES [ NEWS ]

Stuart Scott's acceptance of Jimmy V award shows courage, vulnerability

BY ELIZABETH WHITTINGTON | JULY 18, 2014

Elizabeth Whittington blog image

I'm sure by now you have probably seen or at least heard of Stuart Scott's acceptance speech for the 2014 Jimmy V ESPY Award for Perseverance. Stuart's experience with appendiceal cancer, including qualifying for a clinical trial, was chronicled in a short video that aired before the award presentation.

The video is filled wisdom, humor and inspiration.

"My first thought was 'I'm going to die.' Then about probably 5 seconds later, "I'm going to die and leave Taelor and Sydni. I don't want them to be without a dad. Cancer kills you. People die from cancer."

That was seven years ago. He continued to work at ESPN, travel, exercise, be there for his family... he lived his life. He looked into clinical trials. He underwent treatment. He shared his experience with cancer to the public. He "fought" and promised to "never give up."

Watching it with my family, I noticed some things my family probably may not have: The warrior analogies that many patients and survivors have issues with, the "never giving up," which is from the speech that Jimmy Valvano, who died of cancer in 1993, is so well-known for. Is dying from cancer "giving up" or not fighting hard enough?

Not only was the video moving, but his speech afterward laid those concerns to rest. He was quick to amend what he said in the video.

"Don't give up. Don't ever give up," he quoted Jimmy V's speech again. "I said 'I'm not losing. I'm fighting. I'm not losing.' I have to amend that. When you die that does not mean you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live."

He said he couldn't do the "don't give up" by himself. He mentioned his family, his coworkers and bosses, his medical team, strangers that lift him up, especially when he was too sick to "fight" by himself, which apparently was as recent as last week.

Kudos to Stuart Scott to not only give an inspiring speech about living with cancer, but also showing his vulnerability. Living with cancer is not all about fighting, never giving up, being strong, and hopeful all the time. Scott shared his moments of weakness and doubt, which may have been just as inspiring as him promising to never give up.

You can view the video here.

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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 [ BLOOD CANCERS, TREATMENT ]

FDA approves treatment for rare form of lymphoma

BY JON GARINN | JULY 3, 2014

Jon Garinn blog image

On July 3, the Food and Drug Administration (FDA) granted accelerated approval to Beleodaq (belinostat) for treatment of patients with relapsed or refractory peripheral T-cell lymphoma (PTCL). It is the third drug that has been approved since 2009 for treating patients with this rare form of lymphoma. Folotyn (pralatrexate) and Istodax (romidepsin) were approved for use in this same patient population in 2009 and 2011, respectively. PTCL is a fast-growing immune system cancer affecting the T cells.

More than 70,000 Americans are expected to receive a diagnosis of non-Hodgkin lymphoma this year, and 10 to 15 percent of those cases will be PTCL, according to the National Cancer Institute.

The FDA based its decision on a single arm clinical trial of 120 participants who had received at least one prior treatment. Participants received the experimental drug until they experienced disease progression or an unacceptable toxicity. The overall response rate (meaning the percentage of participants who experienced either a complete or partial response to the treatment) was 25.8 percent, with a median response duration time of 8.4 months.

Side effects included nausea, fatigue, fever, low red blood cells and vomiting. A small number of participants (less than 2 percent) experienced serious side effects, including pneumonia, infection, thrombocytopenia and organ failure.

To receive full approval from the FDA, the manufacturer must continue to evaluate Beleodaq's effectiveness in further clinical trials.

Beleodaq is also being studied in other cancer types, including liver, ovarian and non-small cell lung.

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CATEGORIES [ GENERAL ]

Integrative services can be found in the community

BY JON GARINN | JUNE 27, 2014

Jon Garinn blog image

We've had a handful of responses to our recent feature on integrative therapies, including opponents who insist that integrative oncology is "sham science" and proponents who want to make integrative techniques more widely available.

Olivia Lawrence, an enthusiastic proponent, is responsible for community outreach at Cornucopia Cancer Support Center, based on Durham, N.C. She wrote to tell us that comprehensive cancer centers, such as the ones we referenced in our story, are not the only organizations offering integrative services. Cornucopia, like other nonprofit organizations throughout the country, offers integrative therapies free of charge to patients, survivors and caregivers.

She says because Cornucopia is a non-clinical support center, it offers an environment that many participants prefer to a hospital setting--one that better facilitates peer-to-peer support. She emphasizes that Cornucopia's providers have the necessary licenses and certifications, and all are trained in how to work with patients who have particular treatment challenges.

Cornucopia has identified 89 nonprofit cancer support organizations that provide no- or low-cost integrative services. The organization also offers an extensive list of online resources. If you would like to know whether a support organization offers integrative services in your area, check here for more information.

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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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Spiritual care is central to patient care

BY GUEST BLOGGER | JUNE 25, 2014

Linda Emanuel
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.

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CATEGORIES [ SURVIVORSHIP ]

HOPE in the STARS

BY SUZANNE LINDLEY | JUNE 25, 2014

suzanne lindley blog image

I'm sitting here at chemo, slowly counting Erbitux drips and willing tumors to shrink as each drop falls. The skies outside my window are grey and heavy; filled with drops of their own. Everyone around me is fast asleep. So in this quiet room that overflows with fear and hope, I'm left to ponder the excitement of the week past and the scanticipation of news ahead. In this richness we call life, there is an abundance of contrasts.

Last week, I was too busy to write as the excitement of SuperRide XII was in full force. I was getting ready to welcome friends (riders and cancer survivors) to an event that has been a part of my family for the past 11 years, SuperRide XII. This year, the event partnered with YES! (beatlivertumors.org) to raise funds and awareness through a powerful concert featuring Wade Hayes and Clay Thrash and ending with a final competition ride called HOPE in the STARS. We partnered the All Star team, consisting of two of the best young riders from each team, with 26 cancer survivors. Each rider/survivor pair shared their story and a few of the survivors were even able to travel to Texas and meet their riders.

Getting to visit with fellow survivors, Brian MacLeod, Glen and Sue Susz, Tami Thennis, and Greg and Jen Thorpe made the weekend even more powerful, emotional and special. It was awesome to see them meet their riders and to even have pictures on horseback. Lucky for Glen, this helped to accomplish a bucket list wish for Sue! We all spent our nights on "The Mountain" at Canton in the Palm Cabanas thanks to Holly and Lucille. We were treated to several meals at Dodge City, enjoyed breakfast at my favorite place to start the morning, Downhome Cafe, and feel like we've made some pretty amazing friends through the week.

Wade Hayes performed an acoustic set for us at Texas Rose Horse Park on Thursday night and brought the crowd to their feet with "Go Live Your Life." After having heard his story at The Grand Ole Opry last year, I had tears streaming down my cheeks. It had become a dream of mine to have him perform at one of our events and I couldn't have been more excited about meeting him in person...and having others do the same. He is a stage 4 colon cancer survivor, too, and I knew his story would bring hope and reality into a collision of emotion. What a beautiful thing for dreams to come to fruition!

A few months ago, I had not met or heard of one of the highlights that came to HOPE in the STARS. But as luck would have it, we needed an opening band for Wade. Ronnie is proud to say he discovered Clay Thrash. While at the local barber shop one day, Mike (the owner and guy who keeps Ronnie's hair awesome) was talking about his son who had just released a CD, self-titled Clay Thrash, and his first single off the record, "My Heart." We got Clay's information.

For the past few months I've been working with his manager, Keith Reeves, and have felt a strong connection with this young star's voice and music. What an AMAZING addition! Pam Bonner (drillmaster, coach and friend) wrote a song entitled, HOPE in the STARS, and Clay put it to music and he has also written another song for YES that I will soon be talking about a lot! They were the final two songs performed and could not have been a more perfect ending to our event...heartwarming, emotional and filled with HOPE! And not a dry eye in the house!

Adding these two musicians and their voices to our cause added leaps and bounds to the awareness created by the event with radio interviews (99.9 KMOO), newspaper articles (Tyler Morning Telegraph) and even KLTV. What a foot-stomping, two-stepping, bringing people to their feet, hand clapping way to share some stories!

From last week - watching Karlie compete, seeing Chloe in lead-line, meeting up with old friends and making new ones, music, and fun were part of last week. To this week - which holds the key to my future; immersed in the many things that allow me to enjoy living and moving forward: chemo, nurses, doctors, scans and results.

Perhaps that is the beautiful irony of life; the bad followed by the good, overcoming the challenges by celebrating each moment, and facing the cancer struggle knowing that the best is yet to come. Watching the drip of this chemo today is one treatment closer to experiencing the cure of the future.

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.

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