Life @fter Diagnosis

TIPS

The information presented in this file should NOT be considered legal or medical advice. No additions or changes in treatment should be considered without consulting your physician first and always talk to your legal advisors before signing any docume nts.

When you or a loved one are diagnosed with a serious illness, it really feels like a Mack truck hit you

Here are some TIPS I hope will help you deal with the difficult days ahead
For more info, please go to: http://healthystate.org/lifeattheend/ www.susannataddei.org

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After the initial shock

Google the name of your illness stick to reputable sites (pag. 4) and then set up a daily Google automatic search so you can be up-to-date with news, clinical trials, what experts are saying, etc. 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. 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. If none are near you home, check the internet for on-line support groups. They are an excellent source of information. If you have not done it yet, look into the possibility of buying Long Term Care Insurance (pag.15)

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Surfing the Web

These are some reliable sites to start surfing www.Chemocare.com www.nih.gov/ www.webmed.com www.medpagetoday.com www.caregiver.com www.clinicaltrials.gov www.cancer.org www.sammonspreston.com www.RxHope.com for free or low-cost prescription medications

Great Support Organizations for cancer: The Cancer Support Community Lance Armstrong Foundation Also, look into the top rated hospitals for your type of illness, such as MD Anderson The Preston Robert Tisch Brain Tumor Center at Duke John Hopkins Hospital H. Lee Moffitt Cancer Center Sylvester Comprehensive Cancer Center Mayo Clinic
To learn about MRIs and other Imaging techniques: http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancer
For a complete list of useful links , go to lucreciadelrio.blogspot.com or download the resources and links guide at: http://healthystate.org/lifeattheend/
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About treatments

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 you doctor about trials and cancer vaccines Most cancer vaccines need tumor tissue. Talk to your doctor before surgery about storing tumor tissue If necessary, consider the possibility of going to Rehab even during chemo or other treatments. 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

Some medications can act as a sensitizer for radiation (or other drugs). Ask your doctor if you should take them as close as possible to your RT appointment (see pag. 6)

Check all the info re. handling food and eating out during chemo or any other treatment. Some drugs can really affect your GI tracks 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, so it will be easier to prick the veins
Learn to read your scans/reports. Ask you doctor about them. It will help you understand your illness and options. Ask for a copy of your reports and scans on a CD

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About your medications

You can get a complete list of medications (prescription and over-the-counter) and herbal supplements at MedlinePlus, a service by the National Institute of Health and the U.S Library of Medicine. Use also the medication web site. You will find information on the medication, tips, WHEN and HOW to take it, contraindications, list of side-effects, etc. Most approved medications have a web site with their commercial names. For Example, temodar.com, avastin.com, neulasta.com, etc. Just Google the name and you will get the url address needed.

Some medications can act as a sensitizer for radiation (or other drugs). Ask your doctor if you should take them as close as possible to your RT appointment
Your schedule might get complicated or your appointments delayed. To avoid problems with your pills, always carry a small pill box with one of each of your daily drugs. Always check your State Statutes on insurance coverage and other topics. See pag. 10 for more info Health Care Providers do not always remember to check if there is a contraindication or conflict with your medications/treatment. There are Pharmacists that can help as consultants. (If writing down all your meds gets difficult, just take a picture and carry it with you). You can also check Herbal Supplements and Vitamins at the Office Dietary Supplements, also from the National Institute of Health. ALWAYS inform your doctor about any supplements you or your loved one might be taken. For more tips on medications and cancer related topics, visit MD Andersons Web Site

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Medications factsheet
Preventing Medication-Related Problems An important step to preventing problems is for health care professionals, consumers and caregivers to understand what medication-related problems are, to recognize the signs and symptoms of actual and potential MRPs. These effects or symptoms of MRPs may include: excessive drowsiness confusion depression delirium insomnia Parkinsons-like symptoms incontinence muscle weakness loss of appetite falls and fractures changes in speech and memory. When these symptoms appear, they should be considered red flags to caregivers that an MRP may be happening. Natural Does Not Necessarily Mean Safe and Effective The sale of herbal products in the U.S. is largely unregulated. Companies that sell these products are not required to demonstrate their safety and effectiveness. Some herbal ingredients are not listed on the packaging or the listing may be incomplete or inaccurate, so you may not know what you are taking. Although some herbal and other natural products may be beneficial in some instances, they can have significant and sometimes unpredictable side effects. Many herbals also interact with prescription and over-the-counter medicines. For example, ginkgo biloba, frequently used for memory loss, may interact with blood thinners, high blood pressure medications, and certain pain relievers such as ibuprofen and naproxen. To avoid problems with herbal medicines, talk to your doctor or pharmacist about any herbals you use or are considering using. The Basics of Safe Medication Use Keep updated lists of all medicines, both for yourself and for the person you are caring for (Or take pictures with your cell phone).. Include prescription drugs, over-the-counter medicines, vitamins, other nutritional products, and herbal remedies on the list. Share the lists with your doctors. Some caregivers have to prepare and administer injectable medicines, such as insulin. Be certain that you understand and are comfortable with preparing the proper dosage and administering the injection. Nurses in doctors offices and pharmacists can and should instruct you. Store all of your medications in a designated location in your home. Keep all medications stored together in one place unless they require refrigeration or are labeled store in a cool place. Be sure that your medications are stored out of reach of any children that may visit, especially if you have non-child proof containers. If you are caring for someone with cognitive or memory problems, be sure all medications are safely stored away. Do not mix different medications together in one container; this will make it difficult if not impossible to identify them in an emergency. Medicines should be stored in a cool, dry area. Do not store your medications in the medicine cabinet in the bathroom or in the kitchen because heat and moisture cause deterioration. Medications stored in the refrigerator should be separated from other items in the refrigerator. Consider keeping refrigerated medications in a plastic box or container. Medications taken by mouth should be kept separate from other items that are for external use only, such as creams. Expired medications (there are expiration dates on all of your medications) and any medication that your doctor has discontinued should be discarded. Never share or give your medications to another person.
To read the complete article, go to: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1104

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Tips for decreasing fatigue

Drink plenty of fluids. Dehydration can make fatigue worse. Be sure to get at least 8 cups of fluid each day. If you are losing weight, be sure to include some fluids that have calories, such as juices or milk. Make sure you get enough rest: take several naps or rest breaks during the day instead of 1 long rest, plan your day to include rest breaks, make rest time special with a good book in a comfortable chair or a favorite video with a friend. Ask you doctor if AMBIEN or similar sleeping medications can help you get a good night sleep. Try easier or shorter versions of your usual activities; don't push yourself to do more than you can manage. Ask for a referral to a dietitian who can work with you to choose the best diet for you. Avoid eating sugary foods. These foods give you a quick energy boost but it wears off and you will be even more tired afterward. Try eating some protein, fat, and/or fiber with each meal and snack. Protein, fat, and fiber can help keep blood sugar more stable. This will give you a more sustained feeling of energy from the food you eat. For example instead of eating 2 pieces of fruit, try eating 1 piece plus a small handful of walnuts, almonds, peanuts, or other nuts. Ask your doctor if the prescription drugs, such as RITALIN or PROVIGIL can help you. For more info you can also check: Tips for Making the Most of Limited Energy

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Travel and housing assistance

To use some of the following services, 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 that are available that may not be on this list.

Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided by volunteer pilots and charitable aviation groups.
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 (800-5429730) is an association of more than 150 nonprofit organizations that provide lodging and support services to families 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.

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Questions to ask your medical team

Always prepare a list of questions you may want to ask your doctor/oncologist if you are considering therapy. Here is a sample list from www.temodar.com
What type and stage of cancer (or other illness) do I have? What is the purpose of treatment for my type of cancer/illness? How will therapy be administered? For how many weeks? What is the chance that the cancer will spread or come back if I do not have therapy? Can I drive myself to and from the treatment facility? Will I be able to continue my normal activities? What side effects may occur and how are they managed? 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? How soon can I go back to my regular activities? Work? Sexual activity? Aerobic exercise? Do you take my insurance? How should I prepare for this financially? What are some of the support groups I can turn to during treatment? Who else gets information about me? Should my spouse, my friends, or another doctor also get information?

Think about your choices and tell your doctor what you want. Consider talking to a nurse and/or social worker too. And Write everything down!
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Insurance
OFF-LABEL DRUGS: When the US Food and Drug Administration (FDA) is satisfied that the drug works and is
safe, it and the maker of the drug create the drug label. If a chemotherapy drug is approved for treating one type of cancer, but is used to treat a different cancer, it is off-label use. Off-label is also called "non-approved" or "unapproved" use of a drug.

By law, these States require insurance coverage of off-label cancer drugs:

Alabama - Arizona - Arkansas - California- Carolina - Colorado - Connecticut - Dakota - Florida -Georgia North Hawaii - Illinois -Indiana - Kansas - Kentucky - Louisiana - Maine South- Maryland - Massachusetts - Michigan Minnesota - Mississippi - Missouri- Nebraska -Nevada - New Hampshire - New Jersey - New Mexico - New York North Dakota - Ohio- Oklahoma - Oregon - Rhode Island - South Carolina -Tennessee -Texas - Virginia Washington (July 08)

How clinical trials are covered by State

AZ CA MD NH VA

AZ CA GA IL LA MD NH NM RI VA

AZ CA CT GA IL LA MD NH NM RI VA

AZ CA IL LA MD NH NM RI VA

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Insurance
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 Check the medication website They might have a copy of the FDA Approval available plus specific instructions on how to better address the insurance denial

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! Medical Documentation:

Initial History and Physical

Doctor's Notes Pathology reports / scans / mri / any other kind of imaging file Records of prior treatments (if any) and response Supporting physician and clinic notes

Infusion records / relevant labs

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"When Your Insurance Company Wont Pay: 12 Tips By Mary Shomon - About.com
1. Dont assume that the first no you receive is final. About 10 percent of all insurance claims are unjustly denied but less than 1 percent of people making insurance claims even question their insurer when their claim is denied. The majority of policyholders who do contest their cases either win their cases or improve their settlements. 2. Insist on a written explanation. Most state laws require insurance companies to provide written explanations of claim denials. Failure to comply may constitute an illegal practice by the insurer. 3. Read your policy carefully to determine if the claim was legitimately denied. The insurance company may have interpreted a clause in your policy differently from the way you understand it. Respect your sense of fairness and what you expect the policy to cover. If the ruling doesnt sound fair, theres a good chance that it isnt. 4. Do not accept filing errors as ground for refusal. Always follow your insurers instruction for filing a claim. But if you fail to fill out a form correctly, or if you miss a deadline for submitting a claim even if you are months late an insurance company cannot refuse to pay an otherwise valid claim unless the company can show it has been harmed by your error or prevented from making an adequate investigation due to your delay. 5. Do your own research to support your claim. If your insurance pays less than you expected for care provided, check what other doctors in your area charge for the same care. If other doctors charge more than you received, challenge the payment.

6. Ask your insurance agent or group administrator at work for support. The agent from whom you purchased your insurance has a duty to make sure the coverage protects your interests.
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Insurance
7. Contact the insurance company directly.

If your insurance agent doesnt resolve the problem within 30 days, telephone the insurance company yourself. Be polite but persistent, and keep going up the corporate ladder. Record of all phone calls, including the names and positions of agents. Save your phone bills that list the calls. Follow up each call with a brief letter stating your understanding of the conservations, and requesting a response within 30 days.

8. Complain in writing if your phone calls dont work. Begin with the person who denied your claim, then write to the persons supervisor. Include your policy number, copies of all relevant forms, bills, and supporting documents and a clear, concise description of the problem. Request that the insurer responds in writing within three weeks. Keep copies of all correspondence. Send letters by registered mail.
9. Write a follow-up letter. If you receive no response, send follow-up letters, with your original letter attached to the insurance companys consumer complaints or customer service department and to the company president. In most states, failure to respond promptly to letters regarding claims is an unfair insurance practice.

10. Enlist outside help. If necessary, add pressure from: your state Department of Insurance this is free. The amount of these departments can help varies from state to state. But some states with strong departments (California, New York, Illinois) will mediate your dispute. You can also get a professional arbitrator or a lawyer.
11. Gain doctors support. If you can enlist your doctors support for your claim, you have a better chance of successfully challenging a claim. 12. Look for violations. If your claim is denied because of a reduction in coverage, determine if you were ever notified about that reduction in coverage. If you were not, then you have a good chance of winning your claim since failure to notify the patient of a reduction in coverage is a violation of the law.
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Tips for Buying Long Term Care Insurance - by Mary Damiano Cargivers.com
There are many things to consider and many options available. Purchasing a policy without making and informed decision can be a costly mistake. Before buying anything, be sure to ask these questions, which serve as a basic guideline of things you need to know. Have you shopped around? Talk to different companies and compare benefits. Do not buy a policy simply because its the least expensive; always compare the coverage. Ask each agent for an outline of coverage, which summarizes each feature of the policy. Stay away from agents who tell you this is a one-time offer. Is everything youve been told actually in writing? Do you understand everything about the policy? Can you afford the premiums? Does your policy have inflation protection and how is that protection computed? A policy that pays $100 a day for nursing home care may sound good now, but what happens years from now when you need a nursing home and they cost $400 a day? Also, make sure the benefit for this coverage is calculated using the compounded interest method rather than simple interest. Does the policy provide death benefits and non-forfeiture benefits? Who decides when youre eligible benefits? Insurance companies have different criteria for paying benefits. Some require only a doctors order. Others base their coverage on the policyholders ability to perform everyday tasks such as bathing, dressing and feeding themselves. These tasks are called Activities of Daily Living, or ADLs. When an insurance company uses ADLs as a guideline, the difference between someone being able to perform these tasks with physical assistance, supervised assistance can mean the difference between eligibility and ineligibility. Does the policy evaluate mental functions when deciding eligibility? A person with Alzheimers may be physically capable of performing ADLs, yet they might forget where they live and wander off or forget to take medications. Unless the policy states that they take mental functioning into consideration, the policyholder with Alzheimers disease may be denied coverage. Does the policy require that in order to qualify for benefits, the policyholder needs one on one continual assistance? This is a very restrictive requirement and one that is difficult to meet. Does the policy clearly explain claim-filing procedures and the policyholders rights to appeal decisions made by the company? Have you done a personal inventory of your income and assets? This is important to see not only if you will be able to afford the policy over an extended amount of time, but also how much you can afford in out-of-pocket expenses. Have you answered all medical questions truthfully? If you cant remember much, refer the company to the doctor who treated you. If youre really not sure about something, legally speaking, I do not recall is a much safer answer than I dont know. Have you re-read the policy and the application to make sure every piece of information is correct? Who has the final say over whether or not you qualify for benefits? Often, and insurance companys doctor can overrule your own doctors recommendations. When it comes to buying Long-Term Care Insurance, your most valuable resource is common sense. Dont allow yourself to give in to scare tactics. Make sure every detail is in writing because a detail can mean the difference between qualifying for benefits or being declared ineligible, and can cost thousands and thousands of dollars. If something sounds to good to be true, it usually is.
For an interesting related article from MetLife read: Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents focuses on caregivers who are adult children over the age of 50, by work status and gender, to consider the impact of caring for parents on the Baby Boomer generation.

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Cobra
COBRA FAQ: The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who lose their health benefits th e right to choose to continue group health benefits provided by their group health plan for limited periods of time under certa in circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events. Qualified individuals may be required to pay the entire premium for coverage up to 102 percent of the cost to the plan. Who is entitled to benefits under COBRA? There are three elements to qualifying for COBRA benefits. COBRA establishes specific criteria for plans, qualified beneficiaries, and qualifying events: Plan Coverage - Group health plans for employers with 20 or more employees on more than 50 percent of its typical business days in the previous calendar year are subject to COBRA. Both full and part-time employees are counted to determine whether a plan is subject to COBRA. Qualified Beneficiaries - A qualified beneficiary generally is an individual covered by a group health plan on the day before a qualifying event who is either an employee, the employee's spouse, or an employee's dependent child. In certain cases, a retired employee, the retired employee's spouse, and the retired employee's dependent children may be qualified beneficiaries Qualifying Events - Qualifying events are certain events that would cause an individual to lose health coverage. The type of qualifying event will determine who the qualified beneficiaries are and the amount of time that a plan must offer the health coverage to them under COBRA. A plan, at its discretion, may provide longer periods of continuation coverage.
How do you file a COBRA claim for benefits? Health plan rules must explain how to obtain benefits and must include written procedures for processing claims. Claims procedures must be described in the Summary Plan Description. Contact the plan administrator for more information on filing a claim for benefits. Complete plan rules are available from employers or benefits offices. There can be charges up to 25 cents a page for copies of plan rules. For more info: http://www.dol.gov/dol/topic/health-plans/cobra.htm

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Web Access
To have Internet access to your accounts, you will need
An User ID and an internet password to be able to access your accounts can be very useful in case of emergency The initial set up is very simple and can be done in a few minutes If you are planning to pay bills and/or make transfers to other banks, you most probably will be required to sign some specific forms (and maybe notarized them). This process takes some time and it would be difficult to accomplish if your loved one is disabled. Once you have everything in place, you will be allowed only to make a couple of trial transfers for a minimum dollar amount. After a few days, you will be able to transfer full amounts, which normally take 3 to 5 days to show up in the new account Most banks do have some limits to the total amount you can transfer via the internet. Make sure you are aware of these limits Leave a copy of all your login info and passwords with your legal documents

The Web
Your friend in times of trouble

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Taxes: What you can deduct (From the IRS Web site)
You can deduct only the part of your medical and dental expenses that is more than 7.5% of your adjusted gross income shown on Form 1040, line 38.
For more detailed information, see Publication 502, but here are some more examples:
Medical Equipment Expenses: Artificial limbs, eyeglasses, and hearing aids. The part of the cost of Braille books and magazines that is more than the price of regular printed editions. Cost and repair of special telephone equipment for hearing-impaired persons. Cost of equipment that displays the audio part of television programs as subtitles for hearing-impaired persons. Cost and maintenance of a wheelchair. Cost and care of a guide dog or other animal aiding a person with a physical disability. Premiums for qualified long-term care insurance, up to certain amounts. The cost of drugs is deductible only for drugs that require a prescription, except for insulin. Other Professional Medical expenses include fees paid to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, etc. Also included are payments for hospital services, qualified longterm care services, nursing services, and laboratory fees. Payments for acupuncture treatments or inpatient treatment at a center for alcohol or drug addiction

You can include in medical expenses the cost of medical supplies such as bandages used to cover torn skin.
The cost of items such as false teeth, prescription eyeglasses or contact lenses, laser eye surgery, hearing aids, crutches, wheelchairs, and guide dogs for the blind or deaf are deductible medical expenses.

Transportation costs primarily for and essential to medical care qualify as medical expenses.
Incidental cost of meals and lodging charged by the hospital or similar institution if your main reason for being there is to receive medical care.

You can include in medical expenses amounts you pay for special equipment installed in a home, or for improvements, if their main purpose is medical care for you, your spouse, or your dependent.

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Dealing with your employer

Dealing with the HR Dep't of your partners company

In big corporations and/or financial institutions, it will be very hard to talk to them or have access to your loved ones info, benefits, etc. Most wont have an authorization form and will not even give information to a legal spouse
Make sure you know the policies they have in place in case of an emergency and if there is access via the internet to this information. It might be the only way to get it.

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On Health Care Reform

The Affordable Care Act: One Year Later Reforms under the Affordable Care Act have brought an end to some of the worst abuses of the insurance industry. These reforms have given Americans new rights and benefits, by helping more children get health coverage, ending lifetime and most annual limits on care, allowing young adults under 26 to stay on their parents health insurance, and giving patients access to recommended preventive services without cost.
Many other new benefits of the law have taken effect, including 50% discounts on brand-name drugs for seniors in the Medicare donut hole, and tax credits for small businesses that provide insurance to employees. More rights, protections and benefits for Americans are on the way through 2014. See major parts of the law on our interactive timeline, or read the Patient's Bill of Rights. Find out how the law provides better benefits and better health Implementation Timeline Click here to see the implementation timeline presented by the Kaiser Family Foundation, an interactive tool designed to explain how and when the provisions of the health reform law will be implemented over the next several years.
For more information please visit the following link for explanations, comparisons, and time tables http://www.healthcare.gov/
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Final Thoughts

Ask for a Social worker at the hospital if you feel you need help navigating the health care system and insurance world!

Never stop talking to people and make sure you check on-line support groups they are the best source of information

Volunteer! You might acquire very important skills that will help you in the future

You will be surprised how many people are willing to help, but you need to have your legal documents in order

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Acknowledgements
I will be forever grateful to
The healthcare providers at the Cancer Support Community , Mercy Hospital & Sylvester The BRAINTMR List, an infinite source of information HealthyState.org and Jenn Molina for giving me this opportunity to share my files

My family and friends for their support

The M W Group Lucrecia, who taught me to be the best that I could be and to love this country as my own!

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, 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.

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