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Google the name of your illness and/or the medications you will be taken stick to reputable sites Go on the web, find non-profit organizations directly related to your type of cancer or other serious illness Govt websites, such as National Cancer Institute , NIH, Clinical Trials, etc., are a valuable resource for information Always get a specialist on your team. Insurance normally will pay for both a generalist and an specialist If you are going to start going in and out of hospitals or doctors offices, protect yourself from infections in hospitals and public places. Wash your hands constantly Get a second and third opinion. It can be in person or via mail. You doctor can help sending files to another hospital You can open a personal FEDEX account for free to send CDs and medical reports back and forth this way Identify the 3 or 4 mayor Treatment Centers for your type of cancer or illness, go to their web site and if possible, subscribe to their newsletters or news update service Check local listings for support groups available in your area. Best source of information. If none are near you home, check the internet for on-line support groups. They are an excellent source of information Clinical Trials are not a last resource. Patients should look into it at the beginning of their diagnosis. Later on might be too late and harder to qualify. Always ask your doctor about trials and cancer vaccines Most cancer vaccines need tumor tissue. Talk to your doctor before surgery about storing tumor tissue Do not add any kind of supplements to your diet without checking with your doctor or other health care providers. It is very important to be aware of Drugs/food interactions during treatment Check all the info re. handling food and eating out during chemo or any other treatment that might affect your immune system. Some drugs can really affect your GI tracks or interact in a negative way. If an infection is recurrent, have an Infectious Disease Doctor check all caregivers who come in contact with the patient If the patient is having problems with swollen extremities, check with the doctor immediately, could be a blood clot. Drink fluids before you a blood work, MRI with contrast, etc. unless otherwise specified. It will be easier to prick your veins Learn to read your scans/reports. Ask your doctor about them. It will help you understand your illness and options. Always ask for a copy of you reports and scans on a CD, normally they are free Have a family member or a friend go with you to doctors appointments. If you go alone, consider using the voice memo feature of you cell phone to record important conversations with your doctors. Having trouble remembering all your medications? Take a picture or send a text message to your cell with the info Get you legal documents in order If you are downloading legal forms from the internet, make sure the copies you get are compliant with your State Laws. Have a list of all the documents and where are they located at hand. Send a copy to your legal representative. Make sure you and another person have access to your financial institutions via internet If you are planning to include a Cuban relative still living on the island on your Will, please make sure your attorney explains the limitations of doing so. Due the US embargo, this can become a very complicated and expensive matter (see page 10 for more legal tips)
Think about your choices and tell your doctor what you want. Consider talking to a nurse and/or social worker too. And please . Write everything down!
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Sylvester Cancer Center Tel 1-800-545-2292 - Miami http://www.sylvester.org/pt_care/faculty_list.asp Mayo Clinic http://www.mayoclinic.org/jacksonville/
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Duke University Robert Tisch Brain Tumor Center Tel (919) 684-5301 http://cancer.duke.edu/btc/ MD Anderson Tel: 1-800-392-1611 (USA) / 1-713-792-6161 http://www.mdanderson.org/ University of California - Tel: West (310) 267-9119 - East (310) 267-9120 http://www.ucla.edu/ Remote Second Opinion Johns Hopkins Tel: +1.410.735.6662, +1.410.735.6663, +1.410.735.6665 http://www.jhintl.net/forpatients/page.aspx?id=80
3. Clinical Trials:
o National Cancer Institute Tel 1-800-4-CANCER - http://nci.nih.gov/clinicaltrials
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The LIVESTRONG Cancer Clinical Trial Matching Service toll free: 866-235-7205 http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asp ClinicalTrials.gov: Occupational Therapy (National Institutes of Health)
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American Medical ID serves the medical community and the public at large by offering quality medical IDs that, in a medical emergency, allow medics or other medical professionals to give prompt, precise treatment. http://www.americanmedical-id.com/
5. Hospice Info:
Brain Hospice o For caregivers, so they may recognize and understand end-stage events that are likely to happen the last few days. http://brainhospice.com/ Hospice Education Institute - Tel 800-331-1620 www.hospiceworld.org Center to Advance Palliative Care (CAPC) www.getpalliativecare.org National Hospice and Palliative Care Organization (NHPCO) HelpLine: 800.658.8898 Spanish HelpLine: 877.658.8896 www.caringinfo.org
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http://www.news-medical.net/
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http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/49 http://www.curetoday.com/index.cfm/fuseaction/page.show/id/42 DrugDigest is a noncommercial, evidence-based, consumer health and drug information site http://www.drugdigest.org/wps/portal/ddigest http://www.webmd.com/brain/news/20080519/can-celery-help-cut-braininflammation?ecd=wnl_epi_053008 http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancer Info, videos and images about CT scans, MRI, gamma knife, Stereotactic Radiosurgery, etc.
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THE PATIENT ADVOCATE FOUNDATION Tel 1-866-512-3861 http://www.copays.org/ - Co-Pay Relief program for people with type 3 and 4 brain tumors
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www.needymeds.com Will provide you with free medication if your income qualifies Patient Access Network - Tel 1 866 316 PANf (7263) Help for out-of-pocket expenses http://www.patientaccessnetwork.org/ Partnership for Prescription Assistance- Tel 1-888-4PPANOW (1-888-477-2669) https://www.pparx.org/Intro.php Pharmaceutical Research and Manufacturers of America (PhRMA) 202-835-3400 www.phrma.org Directory of patient-assistance programs offered by pharmaceutical companies http://www.innovation.org/index.cfm/ToolsandResources/Patient_Assistance_Programs
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RxHope.com (732-507-7400) helps patients obtain free or low-cost prescription medications. Cancer Fund of America is a non-profit organization set up to help cancer patients, hospices, and other non-profit healthcare providers by way of sending products free of charge directly to them http://www.cfoa.org/
http://www.worldofwigs.com/custom_wigs.php
http://www.netwish.org/
Free professional housecleaning services to improve the lives of women undergoing treatment for cancer http://www.cleaningforareason.org/ National Council on the Aging www.benefitscheckup.org
United Way office can also direct people to services in their community.
The Leukemia & Lymphoma Society's patient financial aid program (800-955-4572) provides limited financial assistance to patients with significant need to help defray treatment-related expenses
The National Foundation for Transplants (800-489-3863) provides fundraising assistance for patients needing transplants, including bone marrow and stem cell transplants. The Patient Advocate Foundation (800-532-5274) provides education, legal counseling, and referrals for people with cancer who need assistance managing insurance, financial, debt crisis, and job discrimination issues. www.patientadvocate.org CancerCare's Tips for Finding Financial Assistance section and Financial Help for People with Cancer fact sheet provide information on financial resources. www.cancercare.org . Call 800-813-467, they provide limited grants for people with certain types of cancer The Lance Armstrong Foundation's website LIVESTRONG offers a section for survivors entitled Planning Your Financial Future
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http://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistancePrograms Cure Today Tool Box, an excellent list of resources: http://curetoday.com/toolbox Free subscription to their magazine/guide - Info in Spanish available SAMF - Organization created to assist young adult survivors of cancer with a successful transition into their post-treatment life, by providing financial support through the distribution of grants and scholarships. http://www.thesamfund.org/
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http://cancerandcareers.org/women/paperwork/ How can you maximize job security/benefits and minimize stress when dealing with the avalanche of paperwork and red tape that comes with a cancer diagnosis https://www.disabilityrightslegalcenter.org/index.cfm COBRA FAQ 1-866-4-USA-DOL | TTY: 1-877-889-5627 http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html Please note that a diagnosis of Brain Cancer and other illnesses (they have a list) will be considered terminal by the Social Security Administration and you can ask for expedite processing if necessary. National Coalition for Cancer Survivorship www.canceradvocacy.org Florida Death Certificate: http://www.doh.state.fl.us/planning_eval/vital_statistics/template3.htm Free Forms / Legal Documents for Estate Planning VERY IMPORTANT FOR UNMARRIED COUPLES http://www.ilrg.com/forms/index.html#estateplanning Patient Services, Inc. (800-366-7441) provides assistance with insurance premiums and co-payments for people with chronic diseases. https://www.patientservicesinc.org/
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Documents to prepare if your Insurance Company denies coverage: A letter of appeal (or Medical Necessity) signed by your doctor with:
Patient name, DOB, policy number and any reference number or date from their denial A paragraph with clinical history/information Plan of therapy FDA letter of approval of the medication (cont. next page)
Medical Documentation:
Include any statistical support regarding the benefits of the drug, clinical studies or publication on a medical journal mention of field experts or centers that support the treatment. You can do your own research on the internet and take copies of publications to your doctor's office so they can fax it together with all the other docs. It will save a lot of time! Initial History and Physical Doctor's Notes Pathology reports / CT scans / MRIs / any other kind of imaging file Records of prior treatments (if any) and response Supporting physician and clinic notes Infusion records / relevant labs
Documents to prepare BEFORE hand if you are NOT MARRIED or do not have a designated family member to help you in case of emergency:
General Power of Attorney (which will expire the second the person dies) Last Testament or Will Living Will Health Care Proxy (OR Health Care or Medical Power of Attorney which combines Living Will and Health Care Proxy) HIPPA Release form Co-Parent Agreement Anatomical Donation
IMPORTANT: Make sure all the forms you use are compliant with your State For free forms, go to: www.ilrg.com and/or www.findlaw.com If in Florida, you can use the forms from the Florida Bar Association. Check local Bar Assoc in every State for your particular case Even if you have a General Power of Attorney, most Financial Institutions will require that you and the patient sign their own custom forms. Check with them a.s.a.p. (or have joint accounts with your partner/family member and avoid this hassle) If you have properties, cars, etc. that have a title, you might consider have them in both your names. Same with most bank accounts. These titles cannot be contested (or at least are much harder to contest), the Will can be easily contested! If you dont have your legal affairs in order and/or are not married, please make sure you have at least a Health Care of Attorney signed. Always talk to your attorney about all these documents when doing your Estate planning. (cont. next page)
For people who would like to include CUBAN RELATIVES (Residing on the Island) in their Testament: You need to talk with your lawyers in advance re. the naming of a court appointed guardian (they are only 5 in Miami) and how the restricted Cuban accounts work. This is required by Law and there is no other option due to the US-Cuban embargo The appointed Guardian will charge the Cuban citizen $350 p/hour. These hours that can easily add up to 25 to 30 hours billed), then he will present an invoice to the Court and pay himself directly from the inheritance (you can ask for a copy) and then will charge a percentage on the monies inherited every time he will send a payment to the Cuban resident. Then you will incur in paying Western Union fees and an exchange fee in Cuba. The whole process will reduce at least 50% the amount established in the Will. Ask your attorney about other available options.
If you or someone you love is battling cancer, they can arrange a special experience with their dolphins for you at the Florida Keys. http://www.dolphinsplus.com/omas-dolphin-swim.htm
Ronald McDonald House Charities (630-623-7048) offer free or reduced-cost lodging for families of seriously ill children who are receiving treatment at nearby hospitals.
Others Travel and housing assistance: To use the services below, you might need to contact the National Cancer Info Center at 800-227-2345 to receive an ID Number. They can also provide you with information on other services. o o o o o o o Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided by volunteer pilots and charitable aviation groups. Air Charity Network (877-621-7177) coordinates free air transportation for people in need. Angel Flight Samaritans (800-296-1217) provides long-distance travel for people with cancer and their families in need of travel. The Corporate Angel Network (866-328-1313) arranges free air transportation for people with cancer traveling to treatment using empty seats on corporate jets. The National Patient Travel Helpline (800-296-1217) provides information about charitable, long-distance medical air transportation and provides referrals to appropriate sources. The Candlelighters Childhood Cancer Foundation maintains a list of additional organizations offering assistance for treatment-related travel. The National Association of Hospital Hospitality Houses (800-542-9730) is an association of more than 150 nonprofit organizations that provide lodging and support services to families and their loved ones who are receiving medical treatment away from home.
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Cancer Nutrition:
o http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asp
http://www.cancernutrition.com/ http://www.aicr.org/site/PageServer
http://www.cancer.gov/cancertopics/eatinghints/page2
http://nccam.nih.gov/health/bottle/
http://www.mskcc.org/mskcc/html/11570.cfm
http://www.mdanderson.org/departments/CIMER/
http://whfoods.org/foodstoc.php
http://chemocare.com/eatingwell/cancer_diet.asp
11.
http://www.wholefoodsmarket.com/stores/index.html
http://www.jhsnp.com/
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http://www.thickitretail.com/?gclid=CNOMweTtzZoCFQa-sgod4Wvn2Q Instant food thickener to care for people with dysphagia and swallowing problems
The information presented in this document should NOT be considered medical advice. No additions or changes in treatment should be considered without consulting your health care team first.
SOME ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links
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Elastic shoelaces
All photos from Sammons Preston Web site. For more info, go to www.susannataddei.org
OTHER ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links (cont.)
Left: Bath Tub Grab Bar Provides a firm handle at the bath side, and helps give confidence and stability when getting in and out of the bath. The rail is fixed to the side of the bath by a steel clamp, cushioned on the inside by rubber pads. Includes a simple adjustment knob on side of rail. Very easy to install. Below: Leg brace for people with debilitated ankles and hand/wrist splint.
Below: Thick It powderHelps those with swallowing difficulties /dysphagia. Thickens hot or cold, thin or thick liquids and pureed foods to desired consistencies Dissolves instantly Does not change appearance or taste of food Can use containers shown to the right as shakers
Left: Personal Pager - Transmits up to 100 feet, inside or outdoors, through any obstacle. Receiver emits a discreet chime. Can be conveniently worn on belt, hooked to wall or placed on table. Vibrating receiver is ideal for those with hearing difficulty. Requires no installation.
RELEASE AND WAIVER OF LIABLILITY: I hereby release the State of Florida, the Board of Governors, the University of South Florida, WUSF Public Broadcasting, and their officers, employees and agents (hereinafter collectively USF) from all actions, damages, or claims which I or my assigns may have against them which may be incurred as a result of the information presented in this Guide.