The Myeloma Survival Guide : Essential Advice for Patients and Their Loved Ones, Second Edition

The definitive guide to living a longer, fuller life with myeloma The Myeloma Survival Guide makes sense of the difficult questions myeloma patients face, dealing with every aspect of life after diagnosis, from creating a wellness team to navigating treatment options to building a financial safety net. Jim Tamkin, MD, who lived with myeloma for 11 years, and Dave Visel share the insights they've gained as a doctor, patient, and caregiver, including: Everything you need to know about drugs and treatments, including stem cell transplants How to deal with the pain and side effects of chemotherapy, radiation, and surgery Insurance and tax benefits to save money and get you the care you deserve Take-charge tools you can use today to feel better tomorrow The second edition has been thoroughly updated and includes a new chapter on pills and medical adherence. "An invaluable guide to patients with newly diagnosed multiple myeloma. Not only have they provided clear information on the disease and its treatment, but most importantly also convey critical guidance on how to deal with the very personal life-impacting effects of this disease for patients and family members alike." –Kenneth C. Anderson, MD, Kraft Family Professor of Medicine, Harvard Medical School, and Director, Jerome Lipper Multiple Myeloma Center and LeBow Institute for Myeloma Therapeutics, Dana-Farber Cancer Institute Jim Tamkin, MD, FACP, FACE, lived with myeloma for 11 years. He co-founded the TBA (Their Best Advice) Foundation with Dave Visel in 2009 to provide myeloma patients with the resources they need to cope with the disease. He worked as an internist and endocrinologist in Los Angeles until his death in March 2011. Dave Visel is co-founder of the TBA Foundation and author of Living with Cancer: A Practical Guide. He is a retired advertising copywriter and marketing executive, and is a caregiver to his wife, Karen, who has leukemia. They live in Los Angeles. www.TBAfoundation.org

The definitive guide to living a longer, fuller life with myeloma

The Myeloma Survival Guide makes sense of the difficult questions myeloma patients face, dealing with every aspect of life after diagnosis, from creating a wellness team to navigating treatment options to building a financial safety net. Jim Tamkin, MD, who lived with myeloma for 11 years, and Dave Visel share the insights they've gained as a doctor, patient, and caregiver, including:

Everything you need to know about drugs and treatments, including stem cell transplants

How to deal with the pain and side effects of chemotherapy, radiation, and surgery

Insurance and tax benefits to save money and get you the care you deserve

Take-charge tools you can use today to feel better tomorrow

The second edition has been thoroughly updated and includes a new chapter on pills and medical adherence.

"An invaluable guide to patients with newly diagnosed multiple myeloma. Not only have they provided clear information on the disease and its treatment, but most importantly also convey critical guidance on how to deal with the very personal life-impacting effects of this disease for patients and family members alike." –Kenneth C. Anderson, MD, Kraft Family Professor of Medicine, Harvard Medical School, and Director, Jerome Lipper Multiple Myeloma Center and LeBow Institute for Myeloma Therapeutics, Dana-Farber Cancer Institute

Jim Tamkin, MD, FACP, FACE, lived with myeloma for 11 years. He co-founded the TBA (Their Best Advice) Foundation with Dave Visel in 2009 to provide myeloma patients with the resources they need to cope with the disease. He worked as an internist and endocrinologist in Los Angeles until his death in March 2011.

Dave Visel is co-founder of the TBA Foundation and author of Living with Cancer: A Practical Guide. He is a retired advertising copywriter and marketing executive, and is a caregiver to his wife, Karen, who has leukemia. They live in Los Angeles.

www.TBAfoundation.org

Chapter 14: Rules for Radiation: Huge Machinery Simply Explained -- The Ray Gun Comes to Life -- The First Rule for Radiation -- Codicil to the First Rule -- Clarification of the Codicil -- More Hope than Promise -- The Arsenal -- Imaging Devices Used for Information or as Guides for Procedures -- Radiation Therapy, The Sharp End of the Stick -- Side Effects from Radiation Therapy -- What Can I Do About Fatigue? -- Chapter 15: Notes on Surgery: Surgery Plays Supporting Roles -- Sorts of Surgery Ahead -- Surgery of a Much Higher, More Complex Nature is Needed in Some Cases -- Chapter 16: Your Stem Cell Transplant: Lots of Patients Do It -- A Stem Cell -- Bone Marrow Transplant Versus Stem Cell Transplant -- The Theory -- Results -- Those Who are Eligible Can Expect to be Told to Get a Transplant -- Compatibility -- Start of the Transplant Journey: Diagnosis, Discussion, Decision -- Mark and Tammy Famularo's Story -- The Reasoning Behind this Chemo Strategy -- Vital Support -- Pretransplant Testing -- The Case Nurse -- The First Transplant, June 2005 -- Notes on Mark's First Transplant -- Today's Transplant Procedure -- The Procedure, Step One-Drugs to Stop Your Myeloma's Aggressive Behavior -- Step Two-Tests -- Step Three-Mobilization -- Step Four-Conditioning -- Step Five-Transplant -- Plan B -- The Chapter Closes -- Tips for the Transplant Patient -- Tips for the Transplant Patient's Caregiver -- The Day After Tomorrow -- Chapter 17: Thoughts on the Human Condition: Sometimes Things Go Wrong -- An Illustration -- Mistakes and Omissions -- Keep Your Cool -- Keep Your Eye on the Ball -- Keep Clean -- Ask Around Until You're Sure -- Possible Impediments to Best Care -- Ignorance -- The Bureaucracy -- Chapter 18: Is It Too Late for Broccoli? The Role of Diet and Herbs -- Botanical Medicine -- What You Need to Know About the FDA and Regulation Cover -- Title -- Copyright -- Contents -- Preface: Hang In and Hold On -- Introduction -- How Come Nobody's Heard of Myeloma? -- Background -- How This Book Was Written -- Share The Myeloma Survival Guide: Essential Advice for Patients and Their Loved Ones, Second Edition -- Part One: First Steps -- Chapter 1: Take Charge: You Don't Get to Just Sit There -- The Nut of it -- Can I Do This? -- Use it or Lose it -- First Thing: Get a Partner-Caregiver -- Partner-Caregiver Candidates -- Caregivers Not to Hire -- Keep Thorough, Well-Organized Treatment Records -- Long-Range Goals -- Chapter 2: Today's To-Do List: Easy, Important Next Steps -- Recognize that You are a Changed Person -- Get a Guru -- Go With the Flow -- Separate the Sheep from the Goats -- Work on Your Elevator Speech -- Get Your Health Insurance Coverage Started -- Have You Gotten a Qualified, Independent Second Opinion of What's Wrong with You? -- Prayer -- Tell Everyone Who Needs to Know that You have Myeloma -- When People Ask What They Can Do for You, Tell Them -- Consider Joining a Support Group -- Get to Know One or More of the Nonprofits Standing by to Help You -- Start a Clip File and a Library -- Chapter 3: How to Be a Caregiver: Myeloma Is a Team Sport -- Greetings -- The Job is Neither Complicated Nor Heroic -- So Here You are ... -- Be a Very Good Listener -- The Test Pilot Part of this -- You are Now the Expert -- Family Briefings -- Reports by Post -- There will be Bad Days -- Take Care of Yourself -- Chapter 4: Meet Other Patients: Get to Know Your New Community -- This is a Practical Matter -- Get a Patient's-Eye View of People and Places -- Concierge -- Drug Company Concierge -- Support Groups -- Patient and Family Seminars -- Tammy's List -- Chapter 5: The Cognoscenti: Your Treatment Team -- The Selection Circumstance -- The Cognoscenti -- Acupuncturist Chiropractor -- Dentist -- Hematologist -- Herbalist -- Infectious Diseases Physician -- Native American Healer -- Nephrologist -- Nurse -- Nutritionist -- Oncologist -- Ophthalmologist -- Osteopath -- Pharmacist -- Phlebotomist -- Physical Therapist -- Psychiatrist -- Radiologist -- Surgeon -- Urologist -- Nonnegotiable Team Essentials -- Part Two: Financial and Workplace Issues -- Chapter 6: Health Insurance and Other Benefits: Your Financial Safety Net -- Health Insurance -- Other Benefits -- Overseas Treatment Options -- Investigate "Medical Tourism"--Nobody Throws Money Around Like a Myeloma Patient -- Chapter 7: Low-Hanging Fruit: Financial Help, Free Services, and Discount Drugs -- My Good Days -- Healthwell Foundation -- Leukemia and Lymphoma Society -- Patient Access Network Foundation -- Patient Advocate Foundation-and its Fund-Patient Advocate Foundation Co-Pay Relief -- Drug Manufacturer Direct Help Programs -- Patient Assistance Programs -- Free Places to Stay -- Chapter 8: Myeloma Tax Savings: Minimize Your Tax Burden and Get Some Money Back -- Overview -- Qualified Expenses and How they Become Tax Deductions -- A Partial List of Acceptable Deductions -- Some Nondeductible Items: A Partial List of Unacceptable Deductions -- The Details -- Deducting Your Qualifying Medical Expenses -- Timing the Medical Expense Deductions -- Alternative Minimum Tax -- Tax-Advantaged Accounts -- Disclaimer -- Chapter 9: Your Workplace: Myeloma Changes Everything -- The Impact of the News -- Consider Opening a Facebook or Caring Bridge Page -- Have an Answer to "What Can I Do?"--Prayer in the Coworker Context -- EAPs Help -- Forecasting the Bumpy Road Ahead -- Chapter 10: Looking Ahead: Estate and Practical Planning -- A Fragile Hope Considered -- Living With Mortality: Life Goes on -- Matters Deserving Your Attention Prepare and Implement an Advance Directive -- Your Will -- Debt and Asset Management -- When the End of Life is in Sight -- Part Three: Managing Treatment -- Chapter 11: Humuhumunukunukuapuaa: Things to Know About Your Drugs -- A Similarity Between People in Lab Coats and Migrant Workers -- The Rules for Naming Drugs, Diseases, and Procedures -- First Rule of Language Management -- Whose Drugs Can You Trust? -- Drugs Myeloma Patients Take -- Families of Drugs That Defeat Myeloma -- Drugs in Clinical Trial -- Off-Label Drug Uses -- Drugs You May Be Given -- Your Treatment -- The Piper will be Paid -- Coming Soon: Chocolate-Covered Revlimid -- Chapter 12: Pills: Take 'em. Seriously. -- Pills Make You More Independent -- Confusion Factors Multiply -- Multiple Teams will Multitask You -- Principles of Meds Management -- Tools to Help You -- Honey, What's this Stuff, Kiptolomib? -- You Will Find Yourself Managing Meds for the Treatment Teams, Too (Though That's Not Supposed to Happen) -- Know What to Do if You Forgot to Take a Pill -- Expiration Date -- Storage -- Security -- "Adherence" and "Nonadherence"--Chapter 13: How to Deal With Chemo: What to Do and How to Do It -- Wade into the Drug Company's Accompanying Literature -- Your Side of the Street -- The Chemo Experience -- History and its Lessons -- Take a Spouse or Close Friend to Chemo With You -- What to Wear -- Random Thoughts as You Prepare for Chemo -- Dos and Don'ts at the Clinic -- If You are Going to Lose Your Hair -- Pain or Numbness in Hands or Feet: Neuropathy -- The Fog that Follows Chemo-Chemo Brain -- Chemo May Open the Door to Infection and Reduced Vitality -- The Effects of Your Chemo Will Vary -- Health Tips -- Don't Hide Unless You Have to -- Professionals Who Need to Know About Your Chemo -- Your Health Insurance and Medicare/Medicaid National Center for Complementary and Alternative Medicine -- The Consensus -- Chapter 19: Pain Management -- The Complexity of Discomfort -- In the Beginning -- Pills and Shots -- Radiation as Pain Killer -- Surgery as Pain Killer -- Complementary Therapies -- Focused Attention Meditation -- Drug Addiction -- Pain Med Terms -- Drugs Used for Various Levels of Pain -- Adjuvants -- Chapter 20: Home Care: You'll Visit Hospitals but You'll Live at Home -- Consider the Possibilities -- Where Does a Person Go to be Sick? -- Major Factors -- Home Care at Home -- Help With Home Care -- Chapter 21: When Bad News Gets Worse: Don't Be Surprised -- Additional Co-Morbidities -- Co-Morbidities Pick on the Elderly -- Does Advancing Age Reduce Treatment Options? -- The Comprehensive Geriatric Assessment -- Forecasting Medicare and Insurance Company Claim Conflicts -- An Economic Co-Morbidity: Don't Get Fired -- To Be, or Not to Be (Sick) -- That is a Question ... -- Patient-Centric Treatment -- Epilogue -- Glossary -- Acknowledgments -- Notes -- Index -- About the Authors