Resources

Starting Out

Mayo Clinic

Put your treatment program in the hands of a care center with a distinct myeloma treatment unit or department. You may not find one at a hospital near you. Don't compromise. This decision affects your well-being and longevity.

Find the Closest Myeloma Treatment Center

A select group of cancer treatment centers are known for success in myeloma treatment. A newly diagnosed person will benefit by becoming the patient of a specializing oncologist affiliated with one of them.

This may turn out to be inconvenient or expensive. There are resources elsewhere on this site that can help with those problems. Please do not compromise. The opportunity to be effectively treated is going to make a very important improvement in the quality of the rest of your life.

Comprehensive Cancer Treatment Centers

The prestigious National Cancer Institute has designated a small number -- about 60 -- of the nation's 85,000 major hospitals and clinics to be "comprehensive cancer treatment centers". Seven or eight of them are pure research facilities and don't serve patients. Any of the others would be an excellent choice for treatment.

This is the link to the comprehensive cancer treatment centers directory at the National Cancer website.
https://www.cancer.gov/research/nci-role/cancer-centers

Myeloma Specialist Treatment Centers

A few hundred hospitals and clinics specialize in the treatment of myeloma. One of them should also be a good place for you to seek care.

An Internet search engine, such as Google, will provide listings and points of contact for these centers. Start with the word "myeloma" in the search box, along with the name of the principal city near you, or the name of a university with a teaching hospital.

Ask a Doctor
Matters concerning health and treatment consume the lives of the physicians among us. It is reasonable to believe that a doctor you know will have good suggestions for finding the right specialist to help you with your myeloma.

Support Group

Join a myeloma patient support group to sharpen your discovery and decision-making processes. Shown, the support group in El Segundo, California; one of more than 170 now meeting across the nation.

Ask a Myeloma Patient or Caregiver

A myeloma patient, or caregiver, whom you know and respect, will likely have useful opinions and recommendations. This person has been down the path ahead of you and may have made important discoveries -- or mistakes -- that you can learn from.

Click on "Join a Support Group" in the tabs above. If you don't find a support group nearby, pick one at random and phone the listed contact. As an alternative, consider joining an online group where you will also find support, encouragement, and the benefit of others with more experience.

Patient and Caregiver Sites

There are a multitude of people who want to tell you about their myeloma experiences on social media and the Internet. If you open this “Pandora’s Box”, you will be served a lifetime supply of good and bad information in seconds. Tread very carefully. Use common sense. Ask someone on your treatment team to validate the things you think you have learned.

Book Publisher and Other Sites by Interested Third Parties

The websites of book publishers, film makers and other commercial interests pop up in general myeloma searches. Some of them are interesting and valuable.

Drug Company Sites

About a dozen pharmaceutical manufacturers are responsible for the drugs that have become so important to the extension of myeloma patients lives*. Each manufacturer maintains one or more websites. Among their objectives: general patient-oriented help and information, discussions of side-effects, clinical trial support, developmental reports to physicians. These sites are interesting, very safe, and highly valuable to patient-consumers.

Medical Information Sites

Sites providing general information on medical subjects, procedures and drugs are often good places to get basic facts. They strive for excellence, often paying well-qualified physicians and nurses to provide content. Many are supported by advertising. Some charge a fee. Some of the better-known sites are listed below:

WebMD.com provides a wealth of health information and tools for managing your health from an award-winning website, which is continuously reviewed for accuracy and timeliness.

MedicineNet.com, part of the WebMD Network, is an online, healthcare media publishing company. It provides easy-to-read, in-depth, authoritative medical information for consumers via its user-friendly, interactive website.

MayoClinic.com is a comprehensive website that has gathered the expertise of over 3300 doctors, researchers, and scientists into a clean, well-organized format.

National Institutes of Health (NIH) http://health.nih.gov/ is one of the world's foremost medical research centers, offering health information for the public as well as medical professionals. 

Myeloma Non-Profit Organizations

In the last two decades, the following nonprofit foundations have stepped forward and have been highly effective in serving myeloma patients.

 

International Myeloma Foundation

imf ogo

A patient-oriented help organization. Maintains an extensive collection of pamphlets explaining disease and related matters, free on request. Offers live counseling, Mon. – Fri., 9a – 4p, PST. Periodic online forums for patients. Presents patient and family seminars around the nation. Provides grants for myeloma research. Operates clinic conferences for physicians. Monthly publication, Myeloma Today, is free on request.

Go to http://myeloma.org for more information.


Multiple Myeloma Research Foundation

MMRF“The MMRF relentlessly pursues innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. “As an end-to-end solution to accelerate drug development, we do everything we can to make sure the next generation of treatments is brought to patients as quickly as possible – from bridging drug discovery gaps through our innovative research portfolio and funding early-stage research, to developing novel business solutions that inject speed and efficiency into every step along the drug development pathway. “By working closely with researchers, clinicians and our partners in the biotech and pharmaceutical industry, we helped bring multiple myeloma patients four new treatments are extending lives around the globe. We are now at a turning point where we have the knowledge, the team and the tolls to build upon this success and advance the next generation of treatments.”

Go to www.multiplemyeloma.org for more information.



Leukemia and Lymphoma Society

LLS LogoThe Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since the first funding in 1954, LLS has awarded more than $680 million in research funding.

Go to www.lls.org for more information.



Institute for Myeloma and Bone Cancer Research

logoNow more than ever the Institute for Myeloma & Bone Cancer Research sees a vital need to focus an independent research effort to develop more effective therapies to improve the quality of life and longevity of patients with these catastrophic diseases. IMBCR president, Dr. James R. Berenson, has spent 28 years working closely on myeloma and bone cancer, and has been privileged to influence the advancement of treatment. This vast experience provides the cornerstone for The Institute for Myeloma & Bone Cancer Research and our dedication to this specific and crucial mission.

Go to www.imbcr.org for more information.


International Waldenstrom’s Macroglobulinemia Foundation

IWMF Logo“The IWMF began in 1994 when Arnold Smokler, a retired pharmacist, was diagnosed with WM. Finding little available information and no organized support groups, he formed the Waldenstrom's Macroglobulinemia Support Group (WMSG). The organization gradually grew and in 1998 was incorporated in the State of Florida under its new name, International Waldenstrom's Macroglobulinemia Foundation, as a non-profit corporation. The organization has continued to grow with supporters including patients, caregivers, medical professionals, and friends throughout the U.S., Canada, Europe and, increasingly, patients and supporters from many other countries. “Purpose and Vision * To provide encouragement and support to patients with Waldenstrom's macroglobulinemia and their families * To provide a means for patients and their families to communicate with each other * To provide information and educational programs that address patient's concerns * To increase awareness of the issues related to WM * To encourage and support research toward more effective treatment and ultimate cure”

Go to www.iwmf.com for more information.



Additional Nonprofit Organizations

The organizations listed here offer services to many sorts of cancer patients. Each has special strengths that may make them worthy of attention.

Join a Support Group

Support groups provide an opportunity to share information and experiences with other myeloma patients, caregivers, and family members in an informal and supportive setting. It is very important to begin the search for a myeloma support group in your doctor's office.

If your myeloma treatment team does not refer patients to a support group, the following two links will take you to the International Myeloma Foundation (IMF) and Multiple Myeloma Research Foundation (MMRF) where you will find listings for your state.


Other suggested links:

Financial Assistance

Being diagnosed with cancer takes a toll on a patient and family members, not only physically and emotionally, but also financially. Here you will find various sources of financial assistance, some specifically for myeloma patients that may help during this difficult time.

NATIONAL NONPROFIT CO-PAY ASSISTANCE PROGRAMS

The following assistance programs focus on co-pays and most require you to have Medicare and/or some other type of insurance.  These programs help pay for the out-of-pocket expenses you are left with after insurance pays most of the bill.  Some of the programs also assist with payment of insurance premiums, deductibles and co-insurance. Contacting the individual programs will give more information to determine what is covered as well as the eligibility requirements.

My Good Days
My Good Days exists to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need. They provide co-pay assistance to patients with private insurance or Medicare Part D. The covered drugs for myeloma patients include Thalidomid, Revlimid, Velcade, Kyprolis, and Pomalyst. The maximum grant allowed for myeloma patients varies from year to year; currently the amount is up to $7,000.

Contact information:
www.mygooddays.org

HealthWell Foundation
The HealthWell Foundation is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, premiums, or other out-of-pocket health care costs for important medical treatments. The specific amount of assistance for myeloma patients varies from year to year, as well as the period of time applications will be accepted. Once the funding for each program has been exhausted, the program is closed until the next year.

Contact information:
Phone: (800) 675-8416 
Fax: (800) 282-7692
www.healthwellfoundation.org

Leukemia and Lymphoma Society
The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Their co-pay program helps patients meet their health insurance or Medicare Part B or D premiums or co-pay obligations. Currently, the maximum annual grant allowed to myeloma patients is $10,000.

Contact information:
Information/Research Center: (800) 955-4572
Co-Pay Assistance Program: (877) 557-2672
www.LLS.org/copay

Patient Access Network Foundation (PAN)
The Patient Access Network Foundation provides financial support for out-of-pocket costs including deductibles, co-pays, and co-insurance associated with a wide range of drugs, to treat a number of conditions. It is currently offering myeloma patients who qualify up to $10,000 per year in assistance.

Contact information:
Phone: (866) 316-PANF (7263)
www.panfoundation.org 

Patient Advocate Foundation
PAF was founded in 1996 on the principal of offering assistance to patients with specific issues they are facing with their insurer, employer and/or creditor regarding insurance, job retention and/or debt crisis matters relative to their diagnosis of life threatening or debilitating diseases. Patients are assigned a case manager who will direct them to valuable outside resources in their specific area of need.

Contact information:
www.patientadvocate.org
Phone: (800) 532-5274 

Patient Advocate Foundation Co-Pay Relief
In 2004, Co-Pay Relief was founded to help insured patients who financially and medically qualify with their out-of-pocket pharmaceutical expenses. Currently, the annual maximum award for myeloma patients is up to $10,000.

Contact information:
www.copays.org
Phone: (866)512-3861
Fax: (757) 873-8999

PATIENT ASSISTANCE PROGRAMS (PAP)

Patient Assistance Programs are services offered by pharmaceutical companies for those who cannot afford their medication. These programs are available to low-income individuals who are under-insured or uninsured and meet the eligibility guidelines. Assistance may range from reduced cost of drugs to free medicine. Most of the well-known pharmaceutical companies have a PAP, and each has its own criteria for eligibility. Some require that a doctor or other medical team member request the application form from the PAP program on your behalf.

 

Most of these organizations provide their services at no cost to patients; therefore, it is important to be cautious of any company asking for money or an upfront fee.

There are several sites that give information about Patient Assistance Programs and may even provide you an application. It is important to be sure the site is up to date, as the programs frequently change with respect to the applications and other requirements. Some of the better known sites are as follows:

Rx Assist
The RX Assist program provides information on statewide drug assistance programs that are available for people who are disabled, have low incomes or are Medicare beneficiaries. Included are programs that provide coverage for Medicare Part D beneficiaries who are having financial difficulty due to a gap in coverage.

Contact information:
Phone: (401)729-3284
www.rxassist.org

Needy Meds
NeedyMeds is a source of information on thousands of programs that may be able to offer assistance to people in need. NeedyMeds does not have an application, nor can they answer questions on individual assistance programs. They strive to provide accurate and current information, but ask that you contact specific programs directly with questions. Needy Meds also offers a free drug discount card that may help you obtain a substantially lower price on your medications. This card can be used instead of insurance or by anyone without insurance.

Contact information:
Phone: (978) 865-4115 
www.needymeds.org

The Partnership for Prescription Assistance
Partnership for Prescription Assistance is sponsored by the Pharmaceutical Research and Manufacturer’s Association (PhRMA), a lobbying company for the pharmaceutical industry. Their mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. They offer a single point of access to more than 475 public and private programs, including nearly 200 offered by pharmaceutical companies. 

Contact information:
Phone: (888)4PPA-NOW or (888) 477-2669)
www.pparx.org

PHARMACEUTICAL COMPANY REIMBURSEMENT ASSISTANCE PROGRAMS

Most pharmaceutical companies offer medicines at a savings or co-pay/reimbursement assistance to patients who qualify.

Amgen/Onyx Inc
Drugs: Kyprolis, Epogen, Neulasta, Neupogen, Xgeva
Amgen Reimbursement Connection
800-272-9376 | www.amgen.com

Bristol-Myers Squibb
Drug: Empliciti
BMS Access Support Program
800-861-0048 | www.BMSAccessSupport.com

Celgene
Drugs: Thalomid, Revlimid, Pomalyst, Alkeran
Celgene's Patient Support Solutions
800-931-8691 | www.celgenepsc.com

Centocor Ortho Biotech
Drugs: Doxil, Procrit
Doxil Reimbursement Hotline
800-609-1083 | www.doxiline.com
Procrit Reimbursement Hotline
800-553-3851 | www.procritline.com

Genentech Access Solutions
Drugs: Rituxan, Avastin
888-249-4918 | www.genentechaccesssolutions.com

Janssen Biotech
Drug: Darzalex
Janssen AccessOne Support
888-222-3771

Novartis
Drugs: Aredia, Farydak, Zometa
Novartis Patient Assistance Program
877-577-7756 | www.copay.novartisoncology.com

Sanofi US
Drugs: Mozobil, Leukine
Journey Partners Program
800-981-2491 | www.sanofi.us

Takeda/Millennium
Drugs: Ninlaro, Velcade
844-617-6468 | www.NINLAROcopay.com
866-835-2233 | www.velcade.com/Paying-for-treatment




PATIENT TRAVEL AND LODGING

CancerCare's Door to Door Program
Provides individual grants up to $100/year to cancer patients of any type. In addition, multiple myeloma patients can receive up to $150/quarter ($600/year) for reimbursement of transportation costs such as gasoline and taxi, bus or train fare to and from their doctor's office. Patients must meet certain eligibility criteria and provide documentation such as receipts. A sample application form and physician verification form can be viewed online.

(800) 813-HOPE (4673)
www.cancercare.org

Public Benefit Flying
A series of well-meaning programs for giving cancer patients free flights to medical treatment have been around for years. The mode of travel is private aircraft, ranging in size from Piper Cub to corporate jet. When all the arrangements and requirements meld, this can be a wonderful way to get somewhere. Certainly, the private aircraft operators are delightful. But:

• Unless you can hop aboard unaided and travel with little or no medical paraphernalia, you may not be able to get the ride.
• If you expect a wheelchair, oxygen, or some other medical amenity to be available, you’d best make certain or take your own.
• There may not be room for all the luggage you normally take. Both bulk and weight restrictions may apply.
• Many are small planes, flying low and slow and sometimes bouncy. You may find this change from Boeing and Airbus lots of fun. Some people discover that this sort of flying takes getting used to.
• Be sure you know what, if any, altitude restriction your doc places on you. The pilot may ask.
• Flights do not always keep to schedules and do not always take off or land where they are supposed to. You had better have Plan B at the ready, and room on a credit card for a last-minute commercial flight.
• These flights often begin or end at an airfield much smaller than you are used to. The normal amenities of commercial air may not be available. Parking may be wholly unattended and food service may be out of a vending machine.
• If you have an emergency medical need, the best help available may be the paramedic from a nearby fire station.
• The good news is that Homeland Security dictums are fewer. You can carry your open bottle of water and toenail clippers aboard. You miss the opportunity to stand in long lines while the contents of your luggage are being tossed and your naked profile is up on somebody’s big-screen TV.

The Air Care Alliance  (Sources of free flights for treatment)
An umbrella organization for Public Benefit Flying (PBF) organizations, whose members use their aircraft to transport needy patients . While the Air Care Alliance lists PBF organizations, it does not arrange missions itself. A person or group needing air support services refers to the Air Care Alliance listings and chooses one or more organizations serving its geographic area and type of mission. The representative then contacts those BPF organizations directly.

Phone: (888) 260-9707
www.aircareall.org/listings.htm

 

ACS Hope Lodges
The American Cancer Society offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Each Hope Lodge provides a nurturing, home-like environment where patients can retreat to private rooms or connect with others. There are currently 31 locations throughout the U.S. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease. There is access to the American Cancer Society's 24-hour toll-free call center and website, as well as a comprehensive on-site library designed to help patients and caregivers make informed decisions.

Phone: (800) ACS-2345
www.cancer.org

Joe’s House
Joe's House is a nonprofit organization providing a nationwide online service that helps cancer patients and their families find lodging near treatment centers. Their mission is to centralize the various lodging options and to streamline the reservations process by listing various types of lodging throughout the U.S. that are near to hospitals and treatment centers. Details on each lodging facility are available with information on amenities, rates, and reservation methods and requirements.  Joe's House works with these hotels and other lodging facilities to centralize inventory and provide medical discounts to cancer patients.

Phone: (877) JOESHOU (877-563-7468)
www.joeshouse.org

Healthcare Hospitality Network (Formerly known as The National Association of Hospital Hospitality Houses, Inc.)
This is another omnibus listing for lodging and other supportive services to patients and their families. Nationally, more than 150 members of the National Association of Hospital Hospitality Houses, Inc. (NAHHH) provide warm, caring support for over a quarter of a million people each year. NAHHH housing typically costs $5 to $15, though sometimes it’s free. Many of its hospitality houses and inns are also listed on the Joe’s House website.

Phone: (800) 542-9730
www.nahhh.org

Other Free and Low-Cost Housing
A growing number of hospitals with myeloma teams have concierge services to meet the housing and other needs of out-of-town patients. Call the hospital’s general information number. Ask for the hospitality help person, the concierge, or the hospital travel coordinator.

You may wonder why neither Burger King nor Ronald McDonald House charities are mentioned. These wonderful housing programs serve youthful patients only.

Free Software for Treatment Management

Product: Myeloma Manager Personal Care Assistant

Developer: International Myeloma Foundation
Version tested: 3.0.1

Available for download without charge at www.myeloma.org
PC compatible only. 85.6MB

Patients facing the demands and dilemmas of disease management have to be impressed by the talents of the Myeloma Manager Personal Assistant. It focuses on myeloma. It understands treatments and priorities. It reminds and guides. It is lean, mean, useful efficiency.

Anyone who occasionally adds software to a computer will find the program easy to install and learn. There's a nice calendar and efficient ways to record and follow complex medication protocols. Reports include notations that help the uninitiated realize the significance of trends. Nice printouts are easy to ask for and likely to help discussions with the medical team.

Regular data entry is required, which must become a discipline for the program to be effective. To help, it has mothering features: "...are you sure?" it asks if the data being entered is out of expected range. If the operator is copying data from the medical team and the doctor has used shorthand in place of precision -- "<10" instead of "9.2" for example -- the data entry process stops until correct verbiage is used.

Before the complexities of surviving myeloma came along, a management program like this would be in excess of most people's needs. There will still be those who prefer other management styles. But after the next unanticipated bout of anemia, the next medication mix-up, the next missed appointment, the next time the software would have shown an important health trend had it been used, a reconsideration of this dandy helpmate may result.

Suggested Reading



The Myeloma Survival Guide by Jim Tamkin M.D. and Dave Visel

Expert Advice for Patients and Their Loved Ones

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. It is endorsed by the nation’s leading authorities and is, by far, the best-selling book on the subject. Read More..



Autologous Stem Cell Transplants by Susan K. Stewart

A Handbook for Patients

The author, Susan Stewart, directs BMT InfoNet, a nonprofit organization that provides information and support to bone marrow, stem cell and cord blood transplant patients. Following her autologous transplant for leukemia in 1989, Stewart began writing Blood & Marrow Transplant Newsletter featuring very helpful news and information. Those eligible for stem cell transplant should read this book, along with Chapter 16, Your Stem Cell Transplant, The Myeloma Survival Guide.

BMT InfoNet
2310 Skokie Valley Road, Ste 140
Highland Park, IL 60035
847-433-3313 or 888-597-7674
help@bmtinfonet.org | www.bmtinfonet.org

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