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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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CATEGORIES [ DIAGNOSIS ]

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 [ BREAST CANCER ]

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

BY GUEST BLOGGER | JUNE 23, 2014

Carrie Corey
Have you ever participated in a clinical trial?

They're VITAL to getting life-saving drugs on the market, but being a guinea pig is easier said than done.

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

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

With the start of each new drug regimen, we pray for as much time as possible before progressing on that drug. Because once my cancer outsmarts the medication I am taking – and we know that it will – I have to cross that drug off my list and find a new one. When that happens, I try to ignore the little voice in my head that asks, "How many drugs are left?"

To be honest – I don't know, and I don't want to. Because the louder, more optimistic voice keeps yelling, "I don't need a long list of drugs... I just need ONE good one."

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

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

With any luck, PARP-inhibitor BMN-673 will be a wonder drug that hits the FDA fast-track. I'm very optimistic to see if the FDA's new breakthrough program is actually going to help us get drugs to market faster, because the new PARP inhibitors definitely qualify as a breakthrough. Now let's just cross our fingers and pray the drug will work some magic. And maybe cross some toes too....

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

Henry

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

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CATEGORIES [ BLOOD CANCERS, ASCO ]

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

BY GUEST BLOGGER | JUNE 18, 2014

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

Several years ago, I heard the early results of a new drug being studied in mantle cell lymphoma (MCL) and chronic lymphocytic leukemia (CLL). The drug (PCI-32765, an inhibitor of Bruton's tyrosine kinase) generated a lot of excitement, but might not have made it to the clinic.

Like the stories behind Viagra and penicillin, the development of PCI-32765 is a classic example of scientists developing a compound for one thing and finding out, almost by accident, that it might be useful for something else. PCI-32765 was developed by a company called Celera engaged in the Human Genome Project as a tool to help find new drugs – not as a potential new drug itself, but the head of Celera resigned after the 2006 completion of sequencing the human genome and progress on their new drug portfolio ground to a halt.

In 2007, Pharmacyclics acquired the intellectual property of Celera including PCI-32765, what was to later become "Imbruvica." PCI-32765 was not among the acquired compounds that was initially pursued; however, it took less than seven years for Imbruvica to enter the clinic for treatment of MCL (2013), and in February 2014, the FDA granted accelerated approval of Imbruvica for patients with previously treated CLL based on a small phase 2 trial that showed an impressive response rate in 48 heavily pretreated patients [NEJM 2013;369:32).

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

The RESONATE trial compared Imbruvica to Arzerra (ofatumumab), another treatment for CLL. Patients with CLL that had relapsed following response to prior treatment or was refractory to treatment were randomized to daily oral Imbruvica or 12 doses of intravenous Arzerra. The goal of the trial was to determine if the 195 patients treated with Imbruvica had longer progression-free survival (PFS) than the 196 patients treated with Arzerra. The trial included patients with poor prognostic characteristics such as bulky disease (about half of the patients) and a third of patients had chromosome 17p deletions.

The majority (86 percent) of patients on the Imbruvica regimen remain on therapy while all but one of the Arzerra patients had completed therapy. Of note, patients who progressed on Arzerra were allowed to cross over to the Imbruvica arm as of August 2013.

The overall response rate was substantially higher for Imbruvica (48 percent) than for Arzerra (4 percent), and the gap was even larger if patients who had a partial response with lymphocytosis were included (63 percent vs. 4 percent). This is consistent with the phase 2 results.

According to the investigators, more than 80 percent of the patients receiving Imbruvica are in remission at one year – more than twice the number expected from standard therapy. More importantly, patients who were treated with Imbruvica had significantly better PFS and overall survival compared with those who were treated with Arzerra. With Imbruvica, the risk of progressive disease or death decreased by 78 percent and 57 percent, respectively. The advantage in overall survival was seen despite patients receiving Imbruvica after progressing on Arzerra.

Probably the most impressive result was that the data was positive in all subgroups, including disease that was refractory to fludarabine or had poor prognostic markers such as 17p deletions, both of which tend to limit the efficacy of traditional therapies.

Both treatments were relatively safe and there were no unexpected toxicities. Diarrhea and mild infection were more common with Imbruvica. Serious infections were similar between the two treatments. Atrial fibrillation (a heart rhythm disorder) was more frequent with Imbruvica (10 patients versus 1 with Arzerra) but caused only treatment discontinuation. Bleeding was also more common with Imbruvica; however, there were no serious events. Infusion reactions and neuropathy were more common with Arzerra. These preliminary results suggest that Imbruvica will achieve full approval; but, final results of this and other phase 3 trials currently underway are needed to see if the impressive results seen in the earlier clinical trials hold up... so look for final data in 2015.

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CATEGORIES [ BLOOD CANCERS, ASCO ]

ASCO: PET-driven therapy for aggressive lymphoma

BY GUEST BLOGGER | JUNE 5, 2014

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

Patients 60 years old and younger who have high-risk aggressive lymphoma (diffuse large B-cell lymphoma [DLBCL]) might not need a transplantation according to results of a phase 2 trial announced at the annual meeting of the American Society for Clinical Oncology.

The trial (LNH 2007-3B), presented by the French GELA/LYSA group, assessed 222 patients' response to chemoimmunotherapy, which was evaluated using positron emission tomography (PET) scans after two (PET2) and four (PET4) cycles of treatment. PET scanning results were used to drive the decision to continue chemoimmunotherapy versus autologous stem cell transplantation (ASCT) after four cycles of treatment. Previously, PET2-negative results had been associated with improved outcomes for patients with high-risk DLBCL, so investigators of the trial thought some patients might not need an ASCT.

Patients on the study were randomized to receive chemoimmunotherapy with Rituxan/CHOP14 or Rituxan/ACVBP14. As expected, patients on the Rituxan/ACVBP14 regimen had a higher rate of serious toxicities, notably febrile neutropenia, infection and mucositis than patients on the Rituxan/CHOP14 regimen. Despite the difference in toxicities, the number of patients who withdrew from the trial early was similar between the arms (six on the Rituxan/ACVBP14 regimen and five on the Rituxan/CHOP14).

Based on PET2 and PET4 scan results, there were three different consolidation treatment plans:

• Patients with a PET4-positive result indicated that active disease was present and the patient was taken off study to receive salvage chemotherapy. Fewer patients on the Rituxan/ACVBP14 regimen received salvage therapy than on the Rituxan/CHOP14 regimen (27 percent and 39 percent, respectively). This difference was statistically meaningful and is consistent with the response advantage seen in lower-risk DLBCL.

• Patients with a PET4-negative result, meaning they had a complete response to chemoimmunotherapy, were treated according to their PET2 scan result.

o Patients with PET4-negative but PET2-positive scans were treated with an ASCT, which resulted in a similar number of patients for each regimen: 41 percent for Rituxan/ACVBP versus 33 percent for Rituxan/CHOP.

o Patients who had both PET2- and PET4-negative scans received further chemoimmunotherapy and the numbers were similar for both regimens. Overall, 25 percent of the patients in this study were eligible for this approach, sparing them from ASCT.

So, what does this trial mean for patients in the U.S.?

First, this phase 2 result is intriguing but requires further investigation before it is ready for the clinic. Second, one of the drugs in the ACVBP regimen is not available in the U.S.; however, despite the differences in numbers of patients with PET4-positive scans between the regimens, progression-free survival and overall survival were not statistically different. The investigators suggested that matching the PET response to an appropriate consolidation therapy might be responsible for the similar survival outcomes.

Finally, using PET to assess response to initial therapy is currently the standard for DLBCL; but some worry about the potential risks of PET scans, notably false positives and second malignancies, particularly in a younger population (those 60 years old and younger). In the case of high-risk DLBCL, biopsies are needed to confirm PET-positivity, and the benefits of PET outweigh the risks given the potential for long-term disease control.

The GELA/LYSA investigators have started a phase 3 trial, called GAINED, to confirm these results.

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CATEGORIES [ BREAST CANCER ]

Searching for NED

BY GUEST BLOGGER | MAY 31, 2014

Carrie Corey

The verdict is in: my scans show progression. My most recent regimen involved a hysterectomy and medicine that caused a mouth full of blisters, but it was not keeping my breast cancer at bay.

Even though we've heard this news before, it always feels like someone pulled the rug out from under me. One might think I would mentally prepare myself for bad scan news, but I refuse to let cancer turn me into a pessimist.

The truth is, I've been lucky in the more than two years since I was diagnosed metastatic. My body has responded to multiple drugs, at least for a little while; my most recent drug regimen is the first one that did not work for me at all.

As many of you know, the name of the metastatic game is "Time until Progression." It's not a matter of if my cancer will return, it's a matter of when. We're fortunate for the many drugs available to prolong our lives in stage 4, but there is no silver bullet yet. And since there is no way to determine which drugs my cancer will respond to until after a round of trial and error, we live our lives in three month intervals between scans, analyzing every muscle pain and headache as a sign that the next scan might show progression.

People can see scan reports of NED (No evidence of Disease) for years, but NED can be a shifty and wiley character. I have had the pleasure of dancing with NED, but it wasn't for very long.

We hang our hats on the hope that one day advanced cancer will really be a chronic, treatable disease like diabetes – that's the anecdote my doctors all tell me when I ask too many forward-thinking questions. I do believe we will get there in my lifetime, but until then, I will keep hitchhiking from one drug to another...searching for NED.

In the past when my scan showed progression, my medical team laid out a very clear "gold standard" next step. This time we appear to be at a crossroads, because they offered me two paths and asked me to choose.

Even though I have excellent medical teams in two top-rated cancer hospitals, it is up to me to drive this bus. Don't get me wrong – I am not advocating ignoring good medical advice, but our lives are at stake, and we need to act like it. Do your own homework, even if it means questioning the recommendations or seeking another opinion altogether. We found a third option: a clinical trial.

So after 14 days with no medication in my system, a barrage of baseline tests and scans, and a mountain of consent forms and questionnaires, I am officially enrolled in a phase 3 clinical trial for BMN-673, a PARP inhibitor designed for metastatic breast cancer patients with a BRCA1/2 genetic mutation. PARP inhibitors are part of the next generation of cancer drugs – they actually work with your DNA to fight cancer. On paper, it looks like the perfect trial for me. (You can read more on PARP inhibitors in "A New Hope.")

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

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

Carrie welcomes your response and comments on CURE's Facebook page.

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CATEGORIES [ YOUNG ADULTS ]

A trip to Vegas with Stupid Cancer

BY GUEST BLOGGER | MAY 14, 2014

Lindsay Braunwalder

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

But I did.

Different people from all over the country, even from different countries, were joined together because of one commonality: Cancer.

At my first Stupid Cancer event, OMG2014, I was surrounded by fellow survivors. It didn't matter what people looked like, if they had hair or not or if they were in a wheelchair. It didn't matter what people needed to talk about, or what emotions they needed to express, no one was there to judge and everyone was there to support one another. I learned of outlets and resources that will help me and so many others in the future.

Because of cancer, and the chemotherapy treatments I underwent, I have long-term side affects I deal with every day. Now I know I have someone to turn to and help when talking to my employers and co-workers about my disability. I met someone who can coach me in life and guide me in developing a plan for my future. Cancer will not hold me back, and I will live a better life.

After a session just for women, I also learned I am not alone in my sexual experiences, struggles and realities, and even though I may have to face these obstacles, it is OK. I am unique and beautiful. This meeting opened my eyes to these things, and I am ever grateful.

While some serious issues were discussed, a four-day trip to Vegas did not go without some relaxation and letting loose. I was able to bond with my roommates, even though we had never met before. We instantly felt as if we had been lifelong friends who were reuniting. There were others I formed such strong bonds with during the various event during the weekend. I want to keep in touch with them all, and I can't wait to see them again.

Everyone I met at the conference helped me to realize it is OK to struggle and it is OK to ask for help. We can overcome anything. Cancer is seen as such a negative thing, as if nothing good can come from it. I would disagree, because during the OMG! Summit, cancer brought us all together. I have come away with meaningful relationships, resources that will support me in the future, and memories that I will treasure forever.

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

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