Online Medical Resource Guide 3

8/6/2019 Online Medical Resource Guide 3

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Useful links for Useful links for

Patients & CaregiversPatients & Caregivers

PRESS CTRL + RIGHT CLICK TO FOLLOW THE LINKS


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W h e n i n i t i a ll y d i a g n o s e d

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 forinformation

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 inhospitals 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 anotherhospital

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 onmight 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 careproviders. 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 mightaffect 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 withthe patient


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If the patient is having problems with swollen extremities, check with the doctor immediately , could be ablood clot.

Drink fluids before you a blood work, MRI with contrast, etc. unless otherwise specified. It will be easier toprick your veins

Learn to read your scans/reports. Ask your doctor about them. It will help you understand your illness andoptions.

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 usingthe 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 cellwith 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 yourState Laws .

Have a list of all the documents and where are they located at hand. Send a copy to your legalrepresentative.

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 sureyour attorney explains the limitations of doing so. Due the US embargo, this can become a very complicatedand expensive matter (see page 10 for more legal tips)


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Q u e s t i o n s t o a s k y o u r d o c t o r Always prepare a list of questions you may want to ask your doctor/oncologist if you are consideringtherapy. 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 aboutreconstructive 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 areadmitted)

How much medical care and housekeeping assistance might be needed when I first return home? Will I need awheelchair/walker/bed commode? Can my family care for me? Can I get other extra nursing help if needed? Doyou 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 yourlocal 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?


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Do you take my insurance? How much of the cost of this treatment will my own insurance/Medicare cover? Howmuch 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 Tel ( 919) 684-5301

o http://cancer.duke.edu/btc/

o MD Anderson 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) 267-9120o http://www.ucla.edu/

o Remote Second Opinion Johns Hopkins - Tel: +1.410.735.6662, +1.410.735.6663,

+1.410.735.6665o http://www.jhintl.net/forpatients/page.aspx?id=80

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.
http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.htmlhttp://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.htmlhttp://www.sylvester.org/pt_care/faculty_list.asphttp://www.mayoclinic.org/jacksonville/http://cancer.duke.edu/btc/http://www.mdanderson.org/http://www.ucla.edu/http://www.ucla.edu/http://www.jhintl.net/forpatients/page.aspx?id=80http://www.cancersupportcommunity.org/http://www.caregiver.com/http://chemocare.com/http://chemocare.com/http://cancersupportcommunitymiami.org/http://www.jhintl.net/http://www.ucla.edu/http://www.cancer.duke.edu/btchttp://www.mayoclinic.org/http://sylvester.org/http://cancercenters.cancer.gov/index.htmlhttp://www.sylvester.org/pt_care/faculty_list.asphttp://www.mayoclinic.org/jacksonville/http://cancer.duke.edu/btc/http://www.mdanderson.org/http://www.ucla.edu/http://www.jhintl.net/forpatients/page.aspx?id=80http://www.cancersupportcommunity.org/http://www.caregiver.com/http://chemocare.com/http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.htmlhttp://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html


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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 LIVE STRONG 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

4. Medical Equipment / Remodelingo 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 offeringquality medical IDs that, in a medical emergency, allow medics or other medicalprofessionals to give prompt, precise treatment. http://www.americanmedical-id.com/

5. Hospice Info:
http://virtualtrials.com/community.cfmhttp://nci.nih.gov/clinicaltrialshttp://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asphttp://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asphttp://clinicaltrials.gov/search/open/condition=%22Occupational+Therapy%22http://www.kmrrec.org/trialshttp://www.sammonspreston.com/http://www.biorelief.com/http://www.dynamic-living.com/index/http://www.goldviolin.com/default.asphttp://www.medicalert.org/home/HomeCatalog.aspx?Catalog=Standardhttp://www.americanmedical-id.com/http://www.americanmedical-id.com/http://www.medicalert.org/default.aspxhttp://biorelief.com/http://www.sammonspreston.com/default.asphttp://www.kessler-rehab.com/http://clinicaltrials.gov/ct2/homehttp://www.livestrong.org/http://nci.nih.gov/http://virtualtrials.com/community.cfmhttp://nci.nih.gov/clinicaltrialshttp://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asphttp://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/apps/s/link.asphttp://clinicaltrials.gov/search/open/condition=%22Occupational+Therapy%22http://www.kmrrec.org/trialshttp://www.sammonspreston.com/http://www.biorelief.com/http://www.dynamic-living.com/index/http://www.goldviolin.com/default.asphttp://www.medicalert.org/home/HomeCatalog.aspx?Catalog=Standardhttp://www.americanmedical-id.com/


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Brain Hospice o For caregivers, so they may recognize and understand end-stage events that are likely tohappen the last 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

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 informationsitehttp://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
http://brainhospice.com/http://brainhospice.com/http://brainhospice.com/http://www.hospiceworld.org/http://www.hospiceworld.org/http://www.getpalliativecare.org/http://www.caringinfo.org/http://www.drugs.com/drug_interactions.htmlhttp://www.drugs.com/drug_interactions.htmlhttp://www.medpagetoday.com/http://www.medpagetoday.com/http://medscape.org/http://jco.ascopubs.org/http://www.news-medical.net/?id=31533http://www.news-medical.net/?id=31533http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/49http://www.curetoday.com/index.cfm/fuseaction/page.show/id/42http://www.drugdigest.org/wps/portal/ddigesthttp://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation?ecd=wnl_epi_053008http://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation?ecd=wnl_epi_053008http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancerhttp://www.radiologyinfo.org/http://www.webmd.com/http://www.news-medical.net/default.asphttp://jco.ascopubs.org/http://www.caringinfo.org/http://www.getpalliativecare.org/home/http://brainhospice.com/http://www.hospiceworld.org/http://www.getpalliativecare.org/http://www.caringinfo.org/http://www.drugs.com/drug_interactions.htmlhttp://www.medpagetoday.com/http://medscape.org/http://jco.ascopubs.org/http://www.news-medical.net/?id=31533http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/49http://www.curetoday.com/index.cfm/fuseaction/page.show/id/42http://www.drugdigest.org/wps/portal/ddigesthttp://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation?ecd=wnl_epi_053008http://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation?ecd=wnl_epi_053008http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancer


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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

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 prescriptionmedications.

o 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

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/
http://www.cancer.org/http://www.copays.org/http://www.needymeds.com/http://www.patientaccessnetwork.org/http://www.patientaccessnetwork.org/https://www.pparx.org/Intro.phphttp://www.phrma.org/http://www.innovation.org/index.cfm/ToolsandResources/Patient_Assistance_Programshttp://www.rxhope.com/http://www.cfoa.org/http://www.worldofwigs.com/custom_wigs.phphttp://www.netwish.org/http://www.cleaningforareason.org/http://www.netwish.org/http://www.worldofwigs.com/index.phphttp://www.innovation.org/https://www.pparx.org/index.phphttp://www.copays.org/index.phphttp://www.cancer.org/http://www.copays.org/http://www.needymeds.com/http://www.patientaccessnetwork.org/https://www.pparx.org/Intro.phphttp://www.phrma.org/http://www.innovation.org/index.cfm/ToolsandResources/Patient_Assistance_Programshttp://www.rxhope.com/http://www.cfoa.org/http://www.worldofwigs.com/custom_wigs.phphttp://www.netwish.org/http://www.cleaningforareason.org/


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o National Council on the Aging www.benefitscheckup.org

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 defraytreatment-related expenses

o The National Foundation for Transplants (800-489-3863) provides fundraisingassistance for patients needing transplants, including bone marrow and stem celltransplants.

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 job discrimination issues. www.patientadvocate.org

o Cancer Care '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

o The Lance Armstrong Foundation's website LIVE STRONG 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/

8. Insurance / Legal Issues

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

o The National Underinsured Resource Directory is intended to help underinsured individuals and

families locate valuable resources and seek alternative coverage options/reimbursements
http://www.benefitscheckup.org/http://national.unitedway.org/http://www.leukemia-lymphoma.org/all_page?item_id=4603http://www.transplants.org/http://www.patientadvocate.org/http://www.patientadvocate.org/http://www.patientadvocate.org/http://www.cancercare.org/get_help/assistance/tips_assist.phphttp://www.cancercare.org/pdf/fact_sheets/fs_financial_en.pdfhttp://www.cancercare.org/pdf/fact_sheets/fs_financial_en.pdfhttp://www.cancercare.org/http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660773/k.4C90/Planning_Your_Financial_Future.htmhttp://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistanceProgramshttp://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistanceProgramshttp://curetoday.com/toolboxhttp://www.thesamfund.org/http://www.patientadvocate.org/help4u.phphttp://www.patientadvocate.org/http://www.thesamfund.org/http://curetoday.com/http://www.cancercare.org/http://www.patientadvocate.org/http://www.transplants.org/http://www.leukemia-lymphoma.org/http://national.unitedway.org/https://ssl2.benefitscheckup.org/index.cfm?cfid=8826220&cftoken=93634715&source_id=1&prev_id=0&org_id=0&partner_id=0&subset_id=0&language_id=EN&access_id=0&client_id=NULL&user_id=NULL&test_id=0http://www.benefitscheckup.org/http://national.unitedway.org/http://www.leukemia-lymphoma.org/all_page?item_id=4603http://www.transplants.org/http://www.patientadvocate.org/http://www.patientadvocate.org/http://www.cancercare.org/get_help/assistance/tips_assist.phphttp://www.cancercare.org/pdf/fact_sheets/fs_financial_en.pdfhttp://www.cancercare.org/pdf/fact_sheets/fs_financial_en.pdfhttp://www.cancercare.org/http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660773/k.4C90/Planning_Your_Financial_Future.htmhttp://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistanceProgramshttp://www.livestrong.org/Get-Help/Find-More-Resources#/f/FinancialGovernmentAssistanceProgramshttp://curetoday.com/toolboxhttp://www.thesamfund.org/http://www.patientadvocate.org/help4u.php


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

o How can you maximize job security/benefits and minimize stress when dealing with theavalanche 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 beconsidered terminal by the Social Security Administration and you can ask for expediteprocessing if necessary.

o National Coalition for Cancer Survivorship

o 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

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

o Patient Services, Inc. (800-366-7441) provides assistance with insurance premiums and co-payments for 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 let ter of approval of the medicat ion

Include any statistical support regarding the benefits of the drug, clinical studies or publicationon 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!

Medical Documentation:

Initial History and Physical Doctor's Notes
http://cancerandcareers.org/women/paperwork/https://www.disabilityrightslegalcenter.org/index.cfmhttp://www.dol.gov/ebsa/faqs/faq_consumer_cobra.htmlhttp://www.canceradvocacy.org/http://www.doh.state.fl.us/planning_eval/vital_statistics/template3.htmhttp://www.ilrg.com/forms/index.html#estateplanninghttps://www.patientservicesinc.org/https://www.patientservicesinc.org/default.asphttp://www.ilrg.com/http://cancerandcareers.org/http://cancerandcareers.org/women/paperwork/https://www.disabilityrightslegalcenter.org/index.cfmhttp://www.dol.gov/ebsa/faqs/faq_consumer_cobra.htmlhttp://www.canceradvocacy.org/http://www.doh.state.fl.us/planning_eval/vital_statistics/template3.htmhttp://www.ilrg.com/forms/index.html#estateplanninghttps://www.patientservicesinc.org/


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Pathology reports / CT scans / MRIs / any other kind of imaging file Records of prior treatments (if any) and response

Support ing physician and cl inic 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 Even if you have a General Power of Attorney, most Financial Institutions will require that you and the patient sign their own custom forms. Checkwith 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 titlescannot 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 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 wi ll 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.

9. Travel & Housing Assistance
http://www.ilrg.com/http://www.ilrg.com/http://www.findlaw.com/http://www.ilrg.com/http://www.findlaw.com/


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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 theNational Cancer Info Center at 800-227-2345 to receive an ID Number. They can also provide you withinformation on other services.

o Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided byvolunteer pilots 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-distance medical 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 theirloved ones who are receiving medical treatment away from home.

10. Cancer Nutrition:

o http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Functio

n.asp
http://www.dreamfoundation.com/http://wish.org/http://www.joeshouse.org/http://www.dolphinsplus.com/omas-dolphin-swim.htmhttp://www.dolphinsplus.com/omas-dolphin-swim.htmhttp://rmhc.org/http://www.aircareall.org/http://www.aircharitynetwork.org/http://www.angelflightsamaritan.org/http://www.corpangelnetwork.org/http://www.corpangelnetwork.org/http://www.patienttravel.org/http://www.patienttravel.org/http://www.candlelighters.org/info_airlines.stmhttp://www.nahhh.org/http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asphttp://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asphttp://www.dolphinsplus.com/dolphin-swim-programs.htmhttp://www.joeshouse.org/Default.aspxhttp://wish.org/http://www.dreamfoundation.org/http://www.dreamfoundation.com/http://wish.org/http://www.joeshouse.org/http://www.dolphinsplus.com/omas-dolphin-swim.htmhttp://www.dolphinsplus.com/omas-dolphin-swim.htmhttp://rmhc.org/http://www.aircareall.org/http://www.aircharitynetwork.org/http://www.angelflightsamaritan.org/http://www.corpangelnetwork.org/http://www.patienttravel.org/http://www.candlelighters.org/info_airlines.stmhttp://www.nahhh.org/http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asphttp://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Function.asp


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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

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
http://www.cancernutrition.com/http://www.cancernutrition.com/http://www.aicr.org/site/PageServerhttp://www.cancer.gov/cancertopics/eatinghints/page2http://nccam.nih.gov/health/bottle/http://nccam.nih.gov/health/bottle/http://www.mskcc.org/mskcc/html/11570.cfmhttp://www.mdanderson.org/departments/CIMER/http://whfoods.org/foodstoc.phphttp://chemocare.com/eatingwell/cancer_diet.asphttp://www.lef.org/newshop/cgi-shop/SearchItems.cgihttp://www.lef.org/newshop/cgi-shop/SearchItems.cgihttp://www.taoofherbs.com/categories/52/VitaminsSupplements.htmhttp://www.vitaminlife.com/http://www.wholefoodsmarket.com/stores/index.htmlhttp://www.wholefoodsmarket.com/stores/index.htmlhttp://www.jhsnp.com/http://www.jhsnp.com/http://www.thickitretail.com/?gclid=CNOMweTtzZoCFQa-sgod4Wvn2Qhttp://www.wholefoodsmarket.com/http://www.vitaminlife.com/http://www.taoofherbs.com/http://www.lef.org/http://whfoods.org/genpage.php?tname=movie&dbid=8http://www.mskcc.org/44http://nccam.nih.gov/http://nci.nih.gov/http://www.aicr.org/site/PageServerhttp://www.cancernutrition.com/http://www.aicr.org/site/PageServerhttp://www.cancer.gov/cancertopics/eatinghints/page2http://nccam.nih.gov/health/bottle/http://www.mskcc.org/mskcc/html/11570.cfmhttp://www.mdanderson.org/departments/CIMER/http://whfoods.org/foodstoc.phphttp://chemocare.com/eatingwell/cancer_diet.asphttp://www.lef.org/newshop/cgi-shop/SearchItems.cgihttp://www.taoofherbs.com/categories/52/VitaminsSupplements.htmhttp://www.vitaminlife.com/http://www.wholefoodsmarket.com/stores/index.htmlhttp://www.jhsnp.com/http://www.thickitretail.com/?gclid=CNOMweTtzZoCFQa-sgod4Wvn2Q


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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

Transfer bench

Pedal Exerciser also for upper 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

Transfer bench

Pedal Exerciser also for upper extremities

Stocking Aid

Rollator

R e a c h e

r

S u r e

H a n d

S t r a p
http://www.susannataddei.org/http://www.susannataddei.org/


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OTHER ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links (cont.)


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Left: Bath Tub Grab BarProvides a firm handle at the bath side,and helps give confidence and stabilitywhen getting in and out of the bath. Therail is fixed to the side of the bath by asteel clamp, cushioned on the inside byrubber pads. Includes a simpleadjustment knob on side of rail. Very

easy to install.Below: Leg brace for people with

Below: Thick Itpowder - Helps those

with swallowingdifficulties /dysphagia. Thickens hot or cold,

thin or thick liquidsand pureed foods todesired consistencies

Dissolves instantly Does not change

appearance or tasteof food

Can use containers

Left: Personal Pager - Transmits up to 100 feet, inside oroutdoors, through any obstacle. Receiver emits a discreetchime. Can be conveniently worn on belt, hooked to wall orplaced on table. Vibrating receiver is ideal for those with

Online Medical Resource Guide 3

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