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Useful links for

Patients & Caregivers

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When initially diagnosed …  

  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 

  Gov’t 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 doctor’s offices, protect yourself from infections in hospitals an d 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 doctor’s 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) 

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Questions to ask your doctor  …  

Always prepare a list of questions you may want to ask your doctor/oncologist if you are considering therapy. Here is a sample list: 

  What type and stage of cancer (or other illness) do I have? Do we need to do a biopsy?

  What is the current location and size of my tumor?

  What are the risks/side effects/complications or neurological deficits associated with my condition or this procedure and/or medications?

And afterwards?  What are the advantages and benefits of this particular surgery or procedure? a. What is the next most frequently used treatment? Its

advantages or disadvantages to standard treatment? Get the facts about reconstructive and plastic surgery.

  Can I donate blood before surgery to have on hand in case I need it? a. Can others donate blood for me too?

  How long do you anticipate the surgery or this procedure will take? How long will my family and loved ones have to wait? Where can they

wait?

  What kind of anesthesia and pain killers will be used? Is there a choice? What are they? How long will I need them?

  Are there new chemotherapy treatments and/or clinical trial treatments available at this hospital that you know of?

  How will therapy be administered? For how many weeks?

  How many patients with this specific illness or tumor do YOU treat each month? Annually?

  What is your follow -up plan if this surgery or radiation treatment does NOT work? HOW important is this to know ahead of time?

  Do you have a copy of your Advance Directives? (Note: This is a legal form that must be filled before any hospital procedure and/or biopsy.Usually at large hospitals they have a notary available when you are admitted)

  How much medical care and housekeeping assistance might be needed when I first return home? Will I need a wheelchair/walker/bed

commode? Can my family care for me? Can I get other extra nursing help if needed? Do you have Social worker that can help me with this?

When can I drive again?

  When will I be able to return to work, full-time, part time, and handle everyday activities by myself again?

(you might consider prepare some frozen meals if you will be alone during this recovery period or check your local delivery options and

have their numbers handy)

  Will therapy affect my sex life or my ability to have children?

  Do I need to take any special precautions, like staying out of the sun or avoiding people with infectious diseases?

  Do I need a special diet during or after my treatment?  Can I exercise?

  If I need Rehab, can I do it during treatment? How long would I need to wait before going to Rehab?

  How soon can I go back to my regular activities? Work? Sexual activity? Aerobic exercise?

  Do you take my insurance? How much of the cost of this treatment will my own insurance/Medicare cover? How much will I have to pay

out of pocket?

  What are some of the support groups I can turn to during treatment?

  Which Social worker can help me with the paperwork?

  Who else gets information about me? Should my spouse, my friends, or another doctor also get information?(List from the Meningioma support group – Tampa, CancerCare and the Temodar pre-visit check list) 

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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1.  If you need to get a second opinion for a cancer diagnosis

o  Cancer Centers: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html 

o  Sylvester Cancer Center Tel 1-800-545-2292 - Miami

o  http://www.sylvester.org/pt_care/faculty_list.asp 

o  Mayo Clinic http://www.mayoclinic.org/jacksonville/ 

o  Duke University Robert Tisch Brain Tumor Center  – 

o  Tel (919) 684-5301 

o  http://cancer.duke.edu/btc/ 

o  MD Anderson  – 

o  Tel: 1-800-392-1611 (USA) / 1-713-792-6161  – 

o  http://www.mdanderson.org/ 

o  University of California - Tel: West (310) 267-9119 - East (310) 267-9120

o  http://www.ucla.edu/ 

o  Remote Second Opinion Johns Hopkins – 

o  Tel: +1.410.735.6662, +1.410.735.6663, +1.410.735.6665

o  http://www.jhintl.net/forpatients/page.aspx?id=80 

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2.  Email / Other Support:

o  The Wellness Community Center Toll Free: 888.793.WELL  – Now the CANCER SUPPORT COMMUNITY. http://www.cancersupportcommunity.org/ 

o  Miami-Dade Chapter: http://cancersupportcommunitymiami.org/ 

o  Local resources and info for caregivers. http://www.caregiver.com/ 

o  http://chemocare.com/ - an excellent source for chemotherapy, chemotherapy side effects and

chemotherapy drug information.

o  Musella Support Group  – Non Medical Issues: http://virtualtrials.com/community.cfm 

3.  Clinical Trials:

o  National Cancer Institute  – Tel 1-800-4-CANCER - http://nci.nih.gov/clinicaltrials 

o  The LIVESTRONG Cancer Clinical Trial Matching Service toll free: 866-235-7205 

o  http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asp

o  ClinicalTrials.gov: Occupational Therapy

(National Institutes of Health)

o  Kessler Medical Rehabilitation Research and Education Corporation - http://www.kmrrec.org/trials 

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4.  Medical Equipment / Remodeling

o  Equipment & Independent Living  – Tel 800-323-5547 - http://www.sammonspreston.com/ 

o  Incontinence Problems  – Tel 1-877-782-3675 - http://www.biorelief.com/ 

Dynamic Living o  http://www.dynamic-living.com/index/ 

Gold Violin o  Independent Living Gadgets – Tel 1-877-648-8400 - http://www.goldviolin.com/default.asp 

o  Medical ID Alert bracelets and necklaces engraved with your primary medical condition, ID number, and the 24-Hour

Emergency Response Center number.http://www.medicalert.org/home/HomeCatalog.aspx?Catalog=Standard 

o   American Medical ID serves the medical community and the public at large by offering quality medicalIDs that, in a medical emergency, allow medics or other medical professionals to give prompt, precisetreatment. 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 thelast few days. http://brainhospice.com/ 

o  Hospice Education Institute - Tel 800-331-1620www.hospiceworld.org 

o  Center to Advance Palliative Care (CAPC)o  www.getpalliativecare.org 

o  National Hospice and Palliative Care Organization (NHPCO)  – HelpLine: 800.658.8898Spanish HelpLine: 877.658.8896

o  www.caringinfo.org 

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6.  Free Medical Info or Abstracts

Drug Interactions o  http://www.drugs.com/drug_interactions.html 

o  http://www.medpagetoday.com/ 

o  http://medscape.org 

o  http://jco.ascopubs.org/ 

o  http://www.news-medical.net/ 

o  http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/49 

o

  http://www.curetoday.com/index.cfm/fuseaction/page.show/id/42 

o  DrugDigest is a noncommercial, evidence-based, consumer health and drug information sitehttp://www.drugdigest.org/wps/portal/ddigest 

o  http://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation?ecd=wnl_epi_053008 

o  http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancer 

o  Info, videos and images about CT scans, MRI, gamma knife, Stereotactic Radiosurgery, etc.

7.  Financial Support Resources

o   AMERICAN CANCER SOCIETY o  1 - 800-ACS-2345 (1-866-228-4327) http://www.cancer.org/ 

o  THE PATIENT ADVOCATE FOUNDATION  – Tel 1-866-512-3861

o  http://www.copays.org/  - Co-Pay Relief program for people with type 3 and 4 brain tumors

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 o  www.needymeds.com Will provide you with free medication if your income qualifies

o  Patient Access Network - Tel 1 866 316 PANf (7263)  – Help for out-of-pocket expenses 

o  http://www.patientaccessnetwork.org/ 

o  Partnership for Prescription Assistance- Tel 1-888-4PPANOW (1-888-477-2669)o  https://www.pparx.org/Intro.php 

o  Pharmaceutical Research and Manufacturers of America (PhRMA) 202-835-3400o  www.phrma.org 

o  Directory of patient-assistance programs offered by pharmaceutical companies

http://www.innovation.org/index.cfm/ToolsandResources/Patient_Assistance_Programs 

o  RxHope.com (732-507-7400) helps patients obtain free or low-cost prescription medications.

o  Cancer Fund of America is a non-profit organization set up to help cancer patients, hospices, andother non-profit healthcare providers by way of sending products free of charge directly to them

o  http://www.cfoa.org/ 

o  http://www.worldofwigs.com/custom_wigs.php 

o  http://www.netwish.org/ 

o  Free professional housecleaning services to improve the lives of women undergoing treatment for

cancer http://www.cleaningforareason.org/ 

o  National Council on the Aging www.benefitscheckup.org 

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o  United Way office can also direct people to services in their community.

o  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

o  The National Foundation for Transplants (800-489-3863) provides fundraising assistance forpatients needing transplants, including bone marrow and stem cell transplants.

o  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 jobdiscrimination issues. www.patientadvocate.org 

o  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, theyprovide limited grants for people with certain types of cancer

o  The Lance Armstrong Foundation's website LIVESTRONG offers a section for survivors entitled

Planning Your Financial Future 

o  http://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistancePrograms 

o  Cure Today Tool Box, an excellent list of resources: http://curetoday.com/toolbox 

o  Free subscription to their magazine/guide - Info in Spanish available

o  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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8.  Insurance / Legal Issues

o  http://www.patientadvocate.org/help4u.php 

o  The National Underinsured Resource Directory is intended to help underinsured individuals andfamilies locate valuable resources and seek alternative coverage options/reimbursements 

o  http://cancerandcareers.org/women/paperwork/ 

o  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

o  https://www.disabilityrightslegalcenter.org/index.cfm 

o  COBRA FAQ 1-866-4-USA-DOL | TTY: 1-877-889-5627http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html 

o  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.o  National Coalition for Cancer Survivorshipo  www.canceradvocacy.org 

o  Florida Death Certificate: http://www.doh.state.fl.us/planning_eval/vital_statistics/template3.htm 

o  Free Forms / Legal Documents for Estate Planning VERY IMPORTANT FOR UNMARRIED COUPLES

o  http://www.ilrg.com/forms/index.html#estateplanning 

o  Patient Services, Inc. (800-366-7441) provides assistance with insurance premiums and co-paymentsfor people with chronic diseases.

o  https://www.patientservicesinc.org/ 

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) 

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• Include any statistical support regarding the benefits of the drug, clinical studies or publication on amedical 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'soffice so they can fax it together with all the other docs. It will save a lot of time!

Medical Documentation: • 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 ofemergency:

• 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 don’t 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 Cubanaccounts 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 presentan 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 moniesinherited 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.

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9.  Travel & Housing Assistance

o  Dream Foundation: Grants last wishes of terminally ill adults. Telephone: 805-564-2131

www.dreamfoundation.com 

o  Make a Wish Foundation for kids: http://wish.org/  - PHONE -(800) 722-WISH (9474)Fax: (602) 2790855

o   Assistance with hotels and an excellent list of other resources for traveling: http://www.joeshouse.org

o  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 

o  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 CancerInfo Center at 800-227-2345 to receive an ID Number. They can also provide you with information on other services.

o   Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided by volunteerpilots and charitable aviation groups.

o   Air Charity Network  (877-621-7177) coordinates free air transportation for people in need.o   Angel Flight Samaritans (800-296-1217) provides long-distance travel for people with cancer and their families

in need of travel.o  The Corporate Angel Network  (866-328-1313) arranges free air transportation for people with cancer traveling

to treatment using empty seats on corporate jets.

o  The National Patient Travel Helpline (800-296-1217) provides information about charitable, long-distancemedical air transportation and provides referrals to appropriate sources.

o  The Candlelighters Childhood Cancer Foundation maintains a list of additional organizations offering assistance

for treatment-related travel. o  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 arereceiving medical treatment away from home.

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10.  Cancer Nutrition:

o  http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asp 

o  http://www.cancernutrition.com/ 

o  http://www.aicr.org/site/PageServer 

o  http://www.cancer.gov/cancertopics/eatinghints/page2 

o  http://nccam.nih.gov/health/bottle/ 

o  http://www.mskcc.org/mskcc/html/11570.cfm 

o  http://www.mdanderson.org/departments/CIMER/ 

o  http://whfoods.org/foodstoc.php 

o  http://chemocare.com/eatingwell/cancer_diet.asp 

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11.  Where to buy supplements:

o  http://www.lef.org/newshop/cgi-shop/SearchItems.cgi 

o  http://www.taoofherbs.com/categories/52/VitaminsSupplements.htm 

o  http://www.vitaminlife.com/ 

o  http://www.wholefoodsmarket.com/stores/index.html 

o  http://www.jhsnp.com/ 

o  http://www.thickitretail.com/?gclid=CNOMweTtzZoCFQa-sgod4Wvn2Q 

o  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.

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SOME ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links

 All photos from Sammons Preston Web site. For more info, go to www.susannataddei.org 

Elasticshoelaces

  D  r e s

 s  i  n g  

  S  t  i c  k

Transferbench

Pedal Exerciser  – also forupper extremities

Stocking Aid

Rollator

  R e a

 c  h e  r

  S  u  r  e

   H a  n  d   S  t  r a  p

Elasticshoelaces

  D  r e s

 s  i  n g  

  S  t  i c  k

Transferbench

Pedal Exerciser  – also forupper extremities

Stocking Aid

Rollator

  R e a

 c  h e  r

  S  u  r  e

   H a  n  d   S  t  r a  p

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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 knobon side of rail. Very easy to install.

Below: Leg brace for people with debilitated

ankles and hand/wrist splint.

Below: Thick It powder-

Helps 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 shownto 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 thosewith hearing difficulty. Requires no installation.

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For more information, you can visit:  http://www.susannataddei.org/ http://www.lucreciadelrio.blogspot.com/ http://healthystate.org/videos 

RELEASE AND WAIVER OF LIABLILITY: I hereby release the State of Florida, the Board of Governors, the University of South Florida, WUSFPublic Broadcasting, and their officers, employees and agents (hereinafter collectively “USF”) from all actions, damages, or claims which I or myassigns may have against them which may be incurred as a result of the information presented in this Guide.