Neuropathy Hope Hope through caring, support, research, education, and empowerment A newsletter for members of the Pacific Chapter of The Neuropathy Association (PCNA) December 2013 Issue 12 Volume 11 Transcript Of The Chemotherapy-Induced Neuropathy Facebook Chat With Cindy Tofthagen, PhD, ARNP PCNA Support Groups President s Message Do Comfort Shoes Exist? PN Literature Review Resources For Neuropathy Information When Shopping Online, Help PCNA At IGIVE Pacific Chapter of The Neuropathy Association P.O. Box 276567 Sacramento, CA 95827-6567 877-622-6298 888-556-3356 info@pnhelp.org www.pnhelp.org Happy 15th Birthday To PCNA A TRANSCRIPT OF THE CHEMOTHERAPY-INDUCED NEUROPATHY FACEBOOK CHAT WITH CINDY TOFTHAGEN, PHD, ARNP, HELD ON AUGUST 22, 2012 Neuropathy Association: Welcome! Thank you for joining us for our CHEMOTHERAPY-INDUCED NEUROPATHY Facebook chat hosted by Cindy Tofthagen, PhD, ARNP. Neuropathy Association: Cindy Tofthagen, PhD, ARNP, is an assistant professor of nursing at the University of South Florida in Tampa and a post-doctoral fellow at the University of Massachusetts and Dana-Farber Cancer Institute. She has 20 years of experience as a nurse specializing in cancer treatment. Her research interests include symptom management, chemotherapy-induced neuropathy, psychological aspects of cancer, and survivorship issues. Dr. Tofthagen also leads a Neuropathy Association support group in Tampa, Florida, helping people with neuropathy and their family and friends better understand the disease and find support. Neuropathy Association: DISCLAIMER: The information provided in this Facebook chat is intended for use as general health and wellness information. It is not intended to replace the personal medical advice of your health care provider. Please discuss all treatment, lifestyle, and diet choices with your health care provider. Neuropathy Association: The following are chemotherapy-induced neuropathy articles that will help guide this conversation: - Helping Cancer Survivors Fight Cancer and Neuropathy - http://bit.ly/rpgecu - Ask the Doctor column addressing chemotherapyinduced neuropathy - http://bit.ly/mhrweo - Highlights of The Neuropathy Association s Neuropathy Summit - Physicians Conference Published as a Supplement to the Journal of the Peripheral Nervous System - http://bit.ly/ KN3gZx Cindy Tofthagen, PhD, ARNP: Many chemotherapy drugs that we use in the fight against cancer cause neuropathy as a side effect. Paclitaxel, docetaxel, cisplatin, and oxaliplatin are common causes. Radiation and cancer surgery can also cause neuropathy. Some people with a pre-existing neuropathy may be at a higher risk of worsening / progressing neuropathy symptoms while receiving life-saving cancer therapies. Some new research may lead to genetic tests that will help us determine who is at high risk for developing neuropathy from chemo. Problems with physical function are one of the main problems that people experience. Physical therapy and/or exercises specifically designed to improve strength and balance may help. From my experience people who are treated with cisplatin or oxaliplatin are more likely to have permanent neuropathy than those receiving other chemo drugs. B6 and B12 vitamins, and Vitamin E are thought to provide some neuro-protection, but haven t been very successful in clinical trials as of yet. Thomas Brannagan, III, MD: Cyclophosphamide is used in the treatment of several cancers. For people with CIDP, treatments are aimed at modifying the body s abnormal immune responses to the peripheral nerves and suppressing disease activity. This may be achieved using a variety of therapies: infusions of intravenous immune globulin (IVIG), plasmapheresis, corticosteroids or cytotoxic drugs such as cyclophosphamide. Gamunex is a form of IVIG that is FDA-indicated for the treatment of CIDP; all other therapies listed above have not obtained approval from the FDA to treat CIDP. [Editor s Note: A special thanks to Dr. Thomas Brannagan, III medical advisor for The Neuropathy Association for helping field questions on chronic inflammatory demyelinating polyneuropathy for this Facebook chat on Chemotherapy-Induced Neuropathy. ] Cindy Tofthagen, PhD, ARNP: If you don t get answers to the questions you are asking on the first visit or two, continue to ask the questions and inform your doctor about the problems you or Continued on page 6
Roster of Our PCNA Information and Support Groups 2013 PCNA Board of Directors Bev Anderson President Karen Polastri Vice President Pam Hart Secretary Sandra Grafrath Director Mary Hoffar Director Jonathan Istilart Director Brad Livingood Director Michael Green Wayne Hewlett Arvin Magusara Casimir Sammanasu Sandra Vinson Dick Ward Please contact your group leader or check your local paper to find out about the topic/speaker for the upcoming meeting. Bev Anderson Editor Newsletter Design by Page 2 Diane Blakley Designs CALIFORNIA Alturas Antioch-Brentwood 3rd Wed. 2 PM Deer Valley 1-2-3-Kaiser 4501 Sand Creek Rd., Antioch Auburn 1 st Monday, 11:00 AM Woodside Village MH Park 12155 Luther Road Sharlene McCord (530) 878-8392 Bakersfield 3 rd Wednesday, 1:30 PM Stockdale Moose Lodge 905 S. Stine Rd. David Wollard (661) 663-9406 Berkeley 3 rd Wednesday, 3 PM N Berkeley Senior Ctr 1901 Hearst Ave. (corner of MLK) Johnetta Smallwood (510) 841-0239 Carmichael 2 nd Tuesday, 1:30 PM Eskaton 3939 Walnut Ave. Karen Robison (916) 972-1632 Call Karen before coming as it is a gated community and sometimes the day/time changes. Castro Valley 2 nd Wednesday, 1:30 PM First Presbyterian Church 2490 Grove Way (next to Trader Joe) Judson Leong (510) 581-6697 Clearlake For information, call Concord 3 rd Thursday, 1:30 PM First Christian Church 3039 Willow Pass Road Wayne Korsinen (925)685-0953 Crescent City Call Bev Anderson for information (877) 622-6298 Davis 2 nd Tuesday 3:30-5:00 PM Davis Senior Center 646 A Street Mary Sprifke (530) 756-5102 Elk Grove 2 nd Tuesday, 1 PM Elk Grove Senior Center 8830 Sharkey Avenue Roger White (916) 686-4719 Eureka Earlene (707) 496-3625 Folsom 3 rd Monday, 1:00 PM odd numbered months Journey Church 450 Blue Ravine Rd. Speaker: Donna Calegari Folsom Medical Supply Fort Bragg Betty Adams (707) 964-3327 Fresno 3 rd Tuesday, 11:00 AM Denny s Restaurant 1110 East Shaw Marvin Arnold (559) 226-9466 Garberville Grass Valley 2 nd Monday, 1:30 PM GV United Methodist Church 236 S. Church Street Salli Hearn (530) 268-1017 Jackson Lakeport 4th Friday, 10:30 AM Lakeport Senior Center 507 Konocti Ave. Grace Gault (707) 274-9999 Lincoln Call Bev Anderson for information (877) 622-6298 Livermore 4 th Tuesday, 10 AM Heritage Estates 900 E. Stanley Blvd. Sandra Grafrath (925) 443-6655 Los Angeles 2nd Monday, 1 PM Will & Ariel Durant L.A. County Library 7140 W. Sunset Blvd. Elizabeth (310) 485-0357 Madera For information call Leo Trzepowski (559) 673-4388 Merced 2 nd Thursday, 1 PM Central Presbyterian Church 1920 Canal Street (The Hoffmeiser Center across the street from the church) Larry Frice (209) 358-2045 Modesto 3 rd Monday, 10:30 AM Trinity United Presbyterian Church 1600 Carver Rd., Rm. 503 Monte Schrader (209) 531-3838 Monterey 3 rd Wed.,10:30 AM odd numbered months First Presbyterian Church 501 El Dorado Street Don & Ann Trout (831) 372-6959 Napa 1 st Thursday, 2 PM Napa Senior Center 1500 Jefferson Street Ron Patrick (707) 257-2343 bonjournapa@hotmail.com Oakland 1 st Thursday, 1 PM Grand Ave. 7 th Adventist Church 278 Grand Ave. Kathleen Nagel (510) 653-8625 Oxnard Tila Estrada (805) 984-1360 Placerville Redding Tiger Michiels (530) 246-4933 Redwood City 4 th Tuesday, 1 PM Sequoia Hospital Health and Wellness Center 749 Brewster Avenue Stan Paschote (510) 490-4456 Roseville 2 nd Wednesday, 1PM odd numbered months Sierra Point Sr. Res. 5161 Foothills Blvd. Sacramento 3 rd Tuesday, 1:30 PM Northminster Presby. Church 3235 Pope Street Charles Moore (916) 485-7723 Salinas Contact Bill Donovan (831) 625-3407 San Francisco 4 th Thursday, 10 AM UC-San Francisco Med Ctr. 400 Parnassus Avenue Amb. Care Ctr. 8th Flr., Rm A888 Y-Nhy (e nee) Duong Nhy-y.duong@ucsf.edu San Jose 3 rd Saturday, 10:30 AM O Conner Hospital 2105 Forest Avenue SJ DePaul Conf. Rm. Stan Pashote (510) 490-4456 San Rafael 3 rd Wednesday, 1 PM Lutheran Church of the Resurrection 1100 Las Galinas Avenue Scott Stokes (415) 246-9156 Continued on page 3
President s Message By Bev Anderson HAPPY 15TH BIRTHDAY TO PCNA On the first Monday of November 1998, Grant Whitney and I decided to see if anyone else in the Greater Auburn Area had neuropathy. We put a paragraph in the newspaper thinking it would go in the calendar or maybe be used as filler. Instead, The Auburn Journal editor put it in the FYI column on the front page -- at the top of the column, no less. We thought maybe six or so might show up, but decided to make a dozen copies of the handouts for that night. Thirtythree people showed up. Grant went to run off more copies. I started the meeting much like I would today by letting each person tell something about themselves and their neuropathy. All participated and asked if we were meeting the next month. We were at Baker s Square in Auburn. I checked to see if we could and the time was open so we scheduled it. That group is still meeting today led by Charlene McCord, a retired kindergarten teacher. A gentleman in Sacramento called me to say that they saw our publicity but it was too far to come so he wanted to start group in Sacramento. They started the next month, December, in the evening at Kaiser Morse Avenue in Sacramento. Today both groups still meet, but in the daytime. Sacramento is led by Charles Moore, a retired English professor from Sacramento State University. Continued on page 5 PCNA Information and Support Groups continued from page 2 Santa Barbara 4th Saturday, 10 AM odd numbered months The First Methodist Church Garden & Anapamu Shirley Hopper (805) 689-5939 Santa Cruz 3 rd Wednesday, 1PM odd numbered months Trinity Presbyterian Church 420 Melrose Avenue Mary Ann Leer (831) 477-1239 maleer@comcast.net Santa Maria 2 nd Tuesday, 12:00 Noon Elwin Mussel Senior Center 510 Park Street Wanda (805) 938-1086 Mary (805) 344-6845 Santa Rosa 1 st Thursday, 10:30 AM Santa Rosa Senior Center 704 Bennett Valley Road Katherine Pennywitt (707) 529-9692 Sonoma For Information call Sonora For information call Stockton 3 rd Tuesday, 1 PM St. Andrew Lutheran Church 4210 Claremont Ave. (at March Lane) Jerry Elliot (209) 447-1242 Susanville Truckee Tulare-Visalia Cathy Moriarity (559) 686-2351 or Esther Hoover (559) 936-6586 Turlock 3 rd Monday, 1 PM Covenant Village Adm. Bldg. Classroom 2125 N. Olive Street Dee Muhlenbruch (209) 667-0042 Ukiah Last Tuesday, 5:30 PM North Coast Opportunities (NCO) 413 N. State St. Shirley Blattner (707) 621-0208 Carole Hester (707) 972-2795 Walnut Creek 4 th Friday, 10 AM Rossmoor, Hillside Clubhouse Las Trampas Room Carolyn Cash (925) 254-8195 West Sacramento No meeting until new leader is found Sandra Vinson (916) 372-6093 slvins11@gmail.com Woodland 1 st Tuesday, 1:30 PM Woodland Comm. & Senior Center 2001 East Street Elizabeth Chaudhry (530) 661-3859 Yreka For information call Yuba City-Marysville 2 nd Tuesday, 10:30AM St. Andrew Presbyterian Church 1390 Franklin Rd. (next to Winco Shopping Center) Ken Lux (530) 673-3479 NEVADA Reno-Sparks For information call OREGON Brookings For information, call Robert Levine (541) 469-4075 Grant s Pass 3 rd Wednesday, 10:30 AM First Christian Church 305 SW H Street Carol Smith (541) 955-4995 Medford 3 rd Friday, 2 PM Rogue Valley Medical Center 2825 E. Barnett Rd. Carpenter Center, Rm. 1 Mike (714) 866-2954 Portland 2 nd Saturday, 8:30 AM St. Andrews Presbyterian Church 8228 SW Sunset Blvd., Portland Joe Mozena (503) 505-0692 Salem 3 rd Monday, 6:30 PM Community Health Education Center Salem Hospital Campus, Bldg. D 890 Oak Street SE Michael (503) 857-3508 newsofsalem@gmail.com Start a support group in your area: Contact Bev Anderson at (877) 622-6298 or info@pnhelp.org Help With Health Care Challenges If the number is not in your area, call the one listed and ask for the right number. Medicare www.medicare.gov The Affordable Health Care Act For current information go to www.healthcare.gov HICAP Health Insurance Counseling for seniors and people with disabilities. www.cahealthadvocates.org /HICAP/ Call (800) 434-0222 to ask a question or to make an appointment. Health Rights Hotline Serving Placer, El Dorado, Yolo, & Sacramento Counties, regardless where you receive your health coverage. Tollfree (888) 354-4474 or TDD (916) 551-2180. In Sacramento, (916) 551-2100. www.hrh.org. HMO Help Center Assistance 24 hours a day, seven days a week. (888) HMO-2219 or (877) 688-9891 TDD DRA s Health Access Project Free publications about the health care, insurance rights and concerns of people with disabilities and serious health conditions. For more information, go to http://dralegal.org/ and click on Projects. Page 3
DISCOUNTS FOR PCNA MEMBERS The following companies or individuals have agreed to give PCNA a discount to PCNA members. Give them a call or visit. If you choose to purchase the service or wares of any on this list, pull out your PCNA Membership Card and claim the discount. Anodyne Therapy Infrared Light Therapy equipment - $50 off Model Freedom 300 (single leg at a time) and $50 discount on Model 120 that does both legs at the same time. Contact: 800-521-6664 or www.anodynetherapy.com HealthLight Infrared Light Therapy equipment - 10% off Single Boot System $999 and Dual boot system $1759 Contact: 888-395-3040 or www.healthlight.us Auburn The Footpath 825 Lincoln Way Auburn, CA 95603 (530) 885-2091 www.footpathshoes.com PCNA Discount: 10% off the regular price shoes. Elk Grove Shoes That Fit 8649 Elk Grove Blvd. Elk Grove, CA (916) 686-1050 PCNA Discount: 20% off the regular price shoes. Fortuna Strehl s Family Shoes & Repair Corner of 12th & Main 1155 Main Street Fortuna, CA 95540 (707) 725-2610 Marilyn Strehl, C.PED is a Certified Pedorthic PCNA Discount: 10% off the regular price shoes. Continued on page 5 DO COMFORT SHOES EXIST? By Talya Wolfson People from all walks of life are adopting the comfort first strategy when it comes to footwear. Physicians are replacing their white sneakers with vibrant colored Crocs and professional women are turning in their heels for equally costly, but significantly less painful, flats and the increasingly popular Fitflops. But for people with neuropathy, finding comfortable shoes may be a bigger challenge. Peripheral neuropathy can result in changes in the form and function of the foot: decreased function of the sensory nerves can cause loss of protective sensation resulting in your being unaware of external damage; abnormal function of the autonomic nerves can cause your skin to become warm and dry resulting in increased sensitivity to the slightest pressure and friction and excessive callus formation; limited joint mobility can cause stiffness of the foot; and deformities may also occur. All of these foot changes or abnormalities require a better understanding of strategies for finding safe and supportive footwear over the long term. - Find a good fit When it comes to footwear, getting a good fit equals comfort. Take the time to walk around, and factor in insoles, stockings and/or socks when trying shoes. Wear shoes that accommodate for swelling, are seamless, and provide support. - Know your feet The foot is made up of 26 bones, 33 joints, and over 100 muscles, tendons, and ligaments. Spend time observing your feet and ask your doctor to check your feet as well to determine if you have high arches, wide feet, or other structural changes that may factor into the type of shoes you wear and the adaptive footwear you might need. - Check your feet and your shoes often Sometimes exposed seams, bits of rubber or leather that rub against the back of your heel, or even debris can hurt your feet; however, you may not feel the discomfort or pain because of your neuropathy. Consequently it s important that you inspect your feet daily for any breaks in skin and injuries and look at your shoes (daily as well) for anything that may cause injury. In addition, signs of wear and tear on your shoes, especially when you notice the same pattern in more than one pair of shoes (both on the inner and outer aspects of the shoes) may be a sign of foot problems. - Listen to your feet Avoid buying and wearing shoes that cause discomfort and pain. Talk to your doctor about any foot discomfort and pain you may experience. Ask your doctor for help if you continue having trouble finding comfortable and supportive footwear. Assess your gait Work with your physical therapist or occupational therapist to assess the way you walk and run, and adopt techniques that do not compromise your feet. - Learn about customized footwear Sometimes your doctor may recommend that you work with a podiatrist and/or a pedorthist to determine if you need adaptive/customized footwear. Many people may also find themselves going through physically and financially many pairs of shoes in search of the right pair. While some people find themselves in a cycle of buying shoes hoping they ll break in the shoes only to find no comfort and then investing in another pair, others wear out their shoes faster than usual. Peter Donato, a member of the Manhattan neuropathy support group, notes, I finally went to a board-certified pedorthist who used advanced computer technology to scan my feet to create an orthotic that met my specific needs. Now, I walk right, I am almost pain free, and my shoes are lasting much longer. Listen to what your feet are telling you, just like you would listen to the rest of your body. If your feet are screaming pain when you are wearing and/or walking about in your shoes, don t ignore them. Carol Holmes, another neuropathy patient shares, I had tried many things to alleviate the pain in my feet. Then I discovered Masai Barefoot Technology walking shoes; they took the pressure off my toes and the balls of my feet. I may never wear pretty shoes again, but, I am grateful that I can still walk, even if I have to wear black walking shoes to church these days. Talya Wolfson is a volunteer at The Neuropathy Association. She is a second-year Barnard student working towards a degree in psychology. Page 4
PERIPHERAL NEUROPATHY LITERATURE REVIEW By William B. Donovan, M.D. We can access the National Library of Medicine (NLM) to obtain information on peripheral neuropathy (PN). There are over 100 medical articles a month written on PN. I review these references and select articles that would appear to be most interesting to us neuropathy sufferers. This is the link to PubMed that will take us to the NLM: www.ncbi.nlm.nih.gov/sites/entrez If you are reading this article on the computer, just click on the above link to go there. If you are reading the print edition of the newsletter, type this link into the address bar of the browser on a computer. If you don t know how, get a librarian or friend to help you. After you get to PubMed, you will see a line that says Search _PubMed followed by for and a space. Every article in the NLM is given a PMID, an eight digit identification number. I will give you PMID numbers of the selected articles. Type the PMID into the space after the for and click on Go at the end of the space, or press the ENTER key on your keyboard. You will then see a one paragraph abstract of the article appear, as well as links to related articles. This month s PMIDs: 12373705 This study of ketamine (0.25-1.5%) ointment reports local anesthetic effect in the early dystrophic stage of complex regional pain syndrome I. Effect is attributed to the drug s blockade of the NMDA receptor. 12707455 This study reports on the non-randomized, uncontrolled treatment of 16 post-herpetic neuralgia patients with the addition of 5mg/ml ketamine gel, with reduction in pain levels from severe to either moderate or mild. 14305159 This paper from the University of Oregon Medical school reports on the relief of chronic intractable pain with the daily topical application of 90% DMSO in 9 0f 11 patients suffering from tic doloreaux. DISCOUNTS FOR PCNA MEMBERS Continued from page 4 Sacramento Midtown Comfort Shoes 3400 Folsom Blvd. Sacramento, CA 95835 (916) 731-4400 PCNA discount: 15% on the regular price. West Sacramento Beverly s Never Just Haircuts and Lilly Nails 2007 W. Capitol Ave, West Sacramento, CA Hair (916) 372-5606 Nails (916) 346-8342 PCNA discount: 10% off the regular price President s Message Continued from page 3 Carolyn Clarke, who attended the Auburn Group, started a group in Grass Valley that is still meeting but in the daytime led by Salli Hearn. I helped start the Roseville Group which moved from evening to daytime. It is without a leader so it is meeting on odd months of the year with my leadership currently. I m not supposed to be a Group Leader so I m hoping and praying a Leadership Team will emerge soon. (Any of our readers interested in leading the Roseville Support Group?) In May 2001, we incorporated as a nonprofit 501 (c) (3) so that we could formalize our organization and make it possible for contributors to write off their donations as a tax deduction. With the Los Angeles Neuropathy Support Group choosing to join our network in October (Hurrah, Los Angeles Neuropathy Group. Welcome!), we now have 40 active groups plus 20 more groups that either just had a meeting that I conducted or are in need of a leadership team. The most critical need at the local level now is for several people willing to work together to keep a group healthy and growing. Of course, it also takes faithful attenders to have a dynamic group that newly diagnosed people can come to in order to get information and support. Soon, you will receive the semi-annual dues reminder and fundraising letter. In the letter that comes with it, I urge you to approach anyone you know that would like to give to a charitable organization they will receive an appropriate receipt so it can be deducted when their taxes are filed. Some businesses are committed to giving back -- sometimes they will consider a customer s 501 (c) (3) organization as good place to make a worthy contribution. We are listed on Guidestar which is often checked by contributors. Here we are at the end of a great year and the beginning of another. I wish you and yours a very happy and healthy holiday season and new year. One of these years a cure for some type of neuropathy will come out. Let s hope it is in 2014. Mice with neuropathy are showing signs of improvement and some are well with what is being studied. Let s hope the process works as well on humans when the trials get underway. Additional Discounts Do you know a business that might offer our members a discount? Tell them that they will be listed each month in our newsletter and on our website so our members will know of their generosity and patronize their business. Call (877) 622-6298 or e-mail info@pnhelp.org. We ll mail an agreement form to the business, and once we have it, we ll add them to this list. FINDING THE BEST NEUROLOGIST FOR NEUROPATHY In the Facebook Chat article in this newsletter The speaker for The Neuropathy Association gave us the best advice: For a complete neuropathy evaluation, it is important to partner with a neurologist that specializes in neuromuscular diseases like neuropathy. Find a physician that specializes in neuromuscular diseases. These can be found in the telephone book or by searching the web for neuromuscular doctors in your area. If you are inquiring about a neurologist ask if they have a specialty in neuromuscular diseases. They may not restrict their practice to just that area of neurology, but if they don t do any neuromuscular work, you don t want to see that neurologist if there is another choice that does. Page 5
A Transcript Of The Chemotherapy-Induced Neuropathy Facebook Chat With Cindy Tofthagen, PhD, ARNP, Held On August 22, 2012 continued from page 1 another is having with neuropathy until you get the answers you need. The oncologists are very focused on treating the cancer and sending your mom to a neurologist was a good decision. Cindy Tofthagen, PhD, ARNP: Neuropathy normally begins in the fingertips and/or the toes. It progresses up the legs and hands in what is called a stocking-glove pattern. The more of the extremity that is involved, the worse it is. It also often impairs a person s ability to do normal day-to-day activities like buttoning buttons, walking, and driving. When it impairs your daily activities, I consider it severe. Participant: I know what you mean by feeling as if you re walking on your bones. There are many times that I feel like that and my feet feel so sore and tender. I m only 27 and I ve had neuropathy symptoms since I was 25. Peripheral neuropathy does not discriminate. Cindy Tofthagen, PhD, ARNP: Sorry to hear of your severe pain. Good pain control is an essential component of treatment for neuropathy. If you haven t already seen a pain management specialist, I would recommend you get in to see one soon. Paraneoplastic syndromes do cause neuropathy too. Neuropathy Association: For a complete neuropathy evaluation, it is important to partner with a neurologist that specializes in neuromuscular diseases like neuropathy. Find a physician that specializes in neuromuscular diseases by visiting http://bit.ly/tz95oz (See the article elsewhere in the newsletter.). Cindy Tofthagen, PhD, ARNP: Many of you have brought up balance issues. Many people do develop problems with balance as a result of neuropathy. As I ve mentioned before, exercise and physical therapy can be very helpful. It is also important to wear properly fitting shoes and keep your environment as safe as possible. Some home health agencies can come out and do a home safety assessment. You can ask your doctor for a referral. Neuropathy Association: Finding comfort shoes poses a challenge for many people living with neuropathy. Hopefully this article will provide some insights: http://bit.ly/pgqvp4. Cindy Tofthagen, PhD, ARNP: (after a comment about other symptoms they were counting as neuropathy) This may be something more serious. It is not usually associated with chemotherapy-induced peripheral neuropathy. Please communicate with your doctors about this right away. Even if your healthcare providers don t ask or evaluate you for neuropathy, if you have symptoms of neuropathy it is very important to tell them about your symptoms and how they are affecting you. Certain medications for depression can be very effective at relieving neuropathic pain. Many of the medications we use to treat neuropathic pain were originally developed for different uses, like depression or seizures. Over time they have been shown to be effective in relieving neuropathic pain. Neuropathy Association: Although there are more questions for neuropathy than there are answers, we are learning more and more about neuropathy every day so, there is always hope! Plus, as a community, we have a responsibility to each other to create hope, and also to ensure it is not too late for some. To Page 6 learn about the different forms of neuropathy, please visit www. neuropathy.org. Also the following articles will help you better understand how neuropathy is evaluated: - Diagnosing Neuropathy The Key to Understanding the Cause - http://bit.ly/jdfmst - American Academy of Neurology Publishes Guidelines for Distal Symmetric Polyneuropathy - http://bit.ly/lfbqmd. Cindy Tofthagen, PhD, ARNP: In general, medications do not repair nerve function, but they help provide pain relief. It is also important to remember that what works for one person may not always work for others. Additionally, you should partner with your doctor to understand how your medications work and the degree of pain relief they provide (remember: we do not yet have a therapy that takes away the pain 100%). You may need to try several different medications and/or doses till you find something that works. Stay in close communication with your healthcare providers about how you are doing so they can make sure you get the best treatment results. Neuropathy Association: Neuropathic pain with CIPN is a challenge many of you face. Working with professionals who are trained in pain management and well-versed in dealing with neuropathic pain is key...here is a link to the transcript of our recent Neuropathic Pain Facebook chat to provide some additional ideas and information to discuss with your healthcare providers: http://bit.ly/o38hmq Cindy Tofthagen, PhD, ARNP: A Vitamin B12 deficiency can cause neuropathy. If you don t have a B12 deficiency, which can be detected with a simple blood test, Vitamin B12 injections may not help. Cindy Tofthagen, PhD, ARNP: I would suggest you get in to see a neurologist if you haven t already. Also, some physical rehabilitation. Neuropathy Association: The Neuropathy Trust in London may be a resource for local specialists in the UK. We suggest reaching out to them as well. Cindy Tofthagen, PhD, ARNP: There are many options for control of painful neuropathy including drugs like pregabalin and gabapentin, certain antidepressants, narcotics, topical medications Don t get discouraged if one therapy doesn t work. There is no one size fits all approach for neuropathic pain. Additionally, clinical research trials offer access to new and emerging treatment options. To learn more about clinical research being done in the area of cancer-related neuropathy, visit http://1.usa.gov/swnmbt. Neuropathy Association: We also profile new neuropathy clinical trials in our monthly e-newsletter (Neuropathy E-News) when we learn about them and have featured quite a few over the past 12-18 months. Be sure to visit www.clinicaltrials.gov as well as sign up for our e-newsletter to stay in the loop: http://bit. ly/oyncxy. Cindy Tofthagen, PhD, ARNP: Occupational therapy can help people adjust to physical limitations and continue to lead productive lives. Continued on page 7
RESOURCES FOR NEUROPATHY INFORMATION RECOMMENDED BOOKS: 1. Norman Latov M.D., Ph.D. Peripheral Neuropathy: When the Numbness, Weakness and Pain Won t Stop 2. Harry J. Gould, III, M.D., and Ph.D. Understanding Pain: What It Is, Why it Happens and How It s Managed 3. Alexander McLellan N.D. and Marc Spitz D.P.M. The Numb Foot Book 4. Mims Cushing You CAN Cope With Peripheral Neuropathy 5. John Senneff Numb Toes and Aching Soles: Coping with Peripheral Neuropathy (www.medpress.com) 6. John Senneff Nutrients for Neuropathy: How to use natural supplements to treat the severe pain RECOMMENDED ONLINE SITES: Pacific Chapter of the Neuropathy Association (PCNA) www.pnhelp.org or toll-free (877) 662-6298 or (888) 556-3356 The Neuropathy Association (TNA) www.neuropathy.org (a national organization) Neuropathy Support Network www.neuropathysupportnetwork.org Neuropathy Action Foundation www.neuropathyaction.org A Transcript Of The Chemotherapy-Induced Neuropathy Facebook Chat With Cindy Tofthagen, PhD, ARNP, Held On August 22, 2012 continued from page 6 People can have autonomic neuropathy that can affect the intestines, bladder, blood pressure, and other internal organs. Many people do notice that the symptoms are worse at night. Swelling may or may not be related to the neuropathy. You may want to tell your doctor about the swelling and ask for something to take before bedtime to control the pain and help you rest. My patients tell me about some of the things they do to deal with neuropathy such as wearing socks at night to keep feet warm, avoiding extreme temperatures, using devices to help reach and grab What are some of the things some of you do to live better with neuropathy? Responses from people participating in the chat: Diabetic shoes and socks, walking cane / wheelchair (as needed), steering wheel cover with stubs for better grip while driving, praying a lot, keeping a positive attitude about life, not becoming home bound, but enjoying the things I can still do and changing doctors when necessary! I try to not alter my physical activities too much. I feel like if I give up it will get that much worse. I also listen to my body and when it says rest I know I need to stop or slow down. Swim, physical therapy, and occupational therapy, larger handles to grab, mat on kitchen floor so dropped things don t break, good shoes... I buy tie shoes that are a size bigger and wider; I use a cane especially on uneven surfaces; I try to stay upbeat and keep my mind on something else. I love my ipad Gentle yoga, Pilates, stay social, and walk, walk, walk! A weighted blanket...i sleep a million times better!!! My mom just ordered it online; it really helps with leg pain. After Sun Aloe Vera Cooling Gel. It actually does help by calming the pain much like it does for sunburns. I try to work out as much as possible. When I jog, I can t feel my feet, but I somehow think it comes from memory. I do give in when my body tells me to always listen to what your body is trying to tell you. And yes, no closing my eyes unless I m in bed, or I ll fall. Having a good doctor helps I m on my third neurologist now. The first two were totally willing to give up on me and put me in a wheelchair. My balance is still bad, but I am walking and doing exercises in the water!!! Capsaicin, wool socks, and meds. IVIG Cindy Tofthagen, PhD, ARNP: As a chronic illness, neuropathy affects the whole person. No matter what part of your life is affected by neuropathy, it is important to seek help. Neuropathy Association: We have 15 Association-designated Neuropathy Centers of Excellence across the U.S. (http://bit. ly/mzodeo), including California and Illinois; each center s staff is well versed in all neuropathies and are conducting active research; several of our center directors also have VA appointments. See if any of the centers are near you and/or reach out to our local support groups in your area (http://bit.ly/ j2ejat) for suggestions on doctors specializing in neuropathy. Cindy Tofthagen, PhD, ARNP: Thank you all for joining us. I wish we could have addressed every comment and concern. Good night! Neuropathy Association: Dr. Tofthagen, thank you for giving your time and expertise to speak with our community and raise awareness of chemotherapy-induced neuropathy, and neuropathy in general. Neuropathy Association: Our mission is to bring help, hope, and healing to the neuropathy community. To do this, The Neuropathy Association offers programs that: increase awareness of neuropathy s scope and impact; promote and expand cutting-edge scientific research; provide patient and physician education and advocacy to improve neuropathy care; and organize national and local patient support programs. As a nonprofit 501(c) 3 charitable organization, we rely on donations from individuals in the neuropathy community to continue our mission-focused initiatives that millions impacted by a neuropathy diagnosis rely on. We receive no government funding and limited corporate support. To learn more about neuropathy and The Neuropathy Association and to support your #1 cause the fight against neuropathy visit www.neuropathy.org! Disclosure: The information provided in this transcript is intended for use as general health and wellness information. It is not intended to replace the personal medical advice of your health care provider. Please discuss all treatment, lifestyle, and diet choices with your health care provider. 2012 The Neuropathy Association. All rights reserved. All material in this e-newsletter is property of The Neuropathy Association and is protected by copyright law. Reproduction of content requires express permission from The Neuropathy Association. Page 7
The Pacific Chapter of The Neuropathy Association A California public benefit, nonprofit, tax exempt corporation P.O. Box 276567, Sacramento, CA 95827-6567 Call PCNA using our toll free phone numbers: (877) 622-6298 Email: info@pnhelp.org PN Information/Advice Support Group Inquiries (888) 556-3356 Email: donnad@pnhelp.org Membership Information/Inquiries Sponsorships General Organizational Inquiries www.pnhelp.org NONPROFIT ORGANIZATION U.S.POSTAGE P A I D PERMIT NO. 25 AUBURN, CA 95603 WHEN SHOPPING ONLINE, HELP PCNA AT IGIVE Click on the igive logo at www.pnhelp.org or go to igive.com/the Pacific Chapter of The Neuropathy Association. Enroll by giving your name and email address, and by creating a personal password. An e-mail will then be sent to you with directions as to how to download the igive button to your computer. By downloading the igive button, you can shop at websites connected with igive without going through the igive.com website. (Unfortunately, iphones and ipads will not connect to the igive system at this time.) Now, you can go directly to any website you choose and shop as usual. If the retailer is connected to igive, your purchase will be automatically recorded and notice sent to igive. You will see the igive On icon in the lower right hand corner of the site s web page, confirming that your purchases there will help The Pacific Chapter of The Neuropathy Association. (Some stores may require you to confirm that you want to donate the percentage they offer to PCNA. If you see the large red igive button on the store s website, please click it to continue.) At the end of the month, all funds due to PCNA will be directly deposited by igive into PCNA s bank account. (If you have trouble anywhere along the way or have questions, send an e-mail to info@pnhelp.org and someone will get back to you to help you.) THANK YOU VERY MUCH! The Pacific Chapter of The Neuropathy Association (PCNA) A California public benefit, nonprofit, tax-exempt corporation. Bev Anderson, Editor P.O. Box 276567 Sacramento, CA 95827-6567 (877) 622-6298 (888) 556-3356 info@pnhelp.org www.pnhelp.org PCNA Headquarters: donnad@pnhelp.org Our mission is to provide support, information and referral to people with neuropathy and to those who care about them, to inform and connect with the health care community, and to support research. Dues - $30 a year All contributions and dues are tax-deductible. We are supported by dues-paying members, contributions by members and friends, and occasionally, small grants and fundraisers. This newsletter is designed for educational and informational purposes only. The information contained herein is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting a qualified health care provider. The Pacific Chapter of the Neuropathy Association (PCNA) does not endorse any treatments, medications, articles, abstracts or products discussed herein. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your condition. The best care can only be given by a qualified provider who knows you personally. Page 8