Facebook Chat recap Living with neuropathy

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!