For Patients and Families

Frequently Asked Questions

 

Q?
How do I find out more about my disease?
A.
The lead oncologist on your case is always the first, best place to seek guidance and explanations. The TBA Foundation has a resource book, The Myeloma Survival Guide. Please also look to other places on this website for immediate answers. Our objective is to provide the latest and best information as often as possible, by constantly surveying the nation's leading myeloma research and treatment centers and obtaining their best advice.
Q?
Where is the best place for treatment?
A.
The primary factor in choosing a place for treatment is confidence in the physician leading the medical team and the treatment facility.The world of medicine has other standards by which some institutions are rated more highly than others. The National Cancer Institute (NCI), an arm of the Federal Government's highly acclaimed National Institutes of Health (NIH), has established criteria by which a US healthcare facility can be named a "comprehensive cancer center"; its top rating. At present, there are 66 NCI designated Cancer Centers, 59 of which treat patients. The other seven are research labs. (This out of 4,200 US hospitals, 80,000 clinics, and well over 100,000 research labs.)

To be a Comprehensive Cancer Center, the facility must have experts in the treatment of myeloma, and all necessary facilities .For a complete list of the NCI designated Cancer Centers, go to https://www.cancer.gov.

Q?
What are the features of an excellent facility?
A.
A qualified medical team, led by an oncologist specializing in myeloma, is primary. Such a team must also have all the treatment options the patient may need available to it. That is not to suggest that the facility must have everything a myeloma patient might need on one site, which is impractical except in a mega-hospital.

It is also beneficial for the team to be supported by good counselors to help with matters such as medical insurance navigation, comprehensive pharmaceutical services, and direction to other medical specialties that both the disease and its treatments may make necessary.

Q?
If I go to the best place, do I always have to go there for my treatments?
A.
This is an important follow-up question after a patient learns that the best medical services for his or her condition are situated somewhere away from home.

There are two points to be made. First, a specialized course of treatment or a clinical trial may require the patient to leave home for an extended period of time and live near the source. In that case, a temporary relocation team, attached to the hospital, is apt to materialize, and should be able to minimize the aggravation.

Secondly, the specialists at the center of excellence realize that patients who have traveled some distance need to go home as soon as possible for both practical and therapeutic reasons. They're going to find a way for the patient to continue receiving the necessary treatment as close to home as possible, as soon as possible.

Q?
Can I change doctors or facilities after treatment begins?
A.
Trust your instincts. If trust in your medical team is not there, you are in an untenable position. Fix it or change doctors immediately.
Q?
Do I need a second opinion?
A.
Getting second opinions is standard practice. They reduce the chance of error and increase the possibility that all avenues of treatment have been considered. Oncologists routinely discuss cases with their peers. Hospitals use tumor boards. Insurance companies often require at least two wholly-independent readings. Myeloma, which is rare, is more apt to require multiple opinions than other, more common cancers. This is a complicated, serious illness. No one has all the answers. Carefully cover every base.

The Block Cancer Foundation, 800/433-0464, effectively helps patients locate qualified sources for second opinions, without charge.

Q?
What if the two opinions don’t agree, do I need a third? A fourth?
A.
You bet. Keep going until you feel certain you have the best advice available.

Several avenues of treatment have recently been successful with myeloma. Each has its adherents. So several good--but conflicting--opinions are quite possible. And all may be promising in your case. When a patient finds himself or herself in a situation like this, three, four, or even more opinions may be necessary before a final decision is made. Both medical authorities and third parties, including the health insurer, have seen this situation before and should be willing to allow space and time for a decision.

Q?
What can happen if I refuse treatment?
A.
If your interest in an answer to this question is more than academic, please ask your doctor.

Speaking in the abstract, myeloma is a progressive disease, and sometimes an aggressive one. Renal failure may occur. Compression fractures, which lead to eventual skeletal deterioration, could be a consequence. Other organs may fail for lack of treatment. This can lead to undue pain and suffering.

Q?
Is it always dangerous to wait before making a decision?
A.
No. But time is not your friend. 

In the early stages of multiple myeloma, the malignant cells grow only in the bone marrow; however, as the disease progresses, these cells learn to grow in other places such as the brain and lungs. Your chances of fighting the disease at an advanced stage decrease exponentially the longer you delay treatment.

Q?
How do I decide which treatment option is best for me and who can help me decide?
A.
Your doctor will determine the treatment plan that is right for you. Due to the ever-changing field of myeloma treatments, it is not wise to question anyone other than your doctor about the specific effects of the treatment prescribed for you. Though it is a complex subject, please take the time to understand what you are going to be treated for, and why the particular treatment option has been selected for you. The more you understand, the more you will be able to contribute to the management of your recovery.

You have the right and are actually expected to make disease-management decisions. Doctors will do what they have to do--are duty-bound to do--unless you take charge. If you demur or are judged to be incompetent, these decisions will bounce from you to your spouse or closest family member, then to the doctor in charge, or to some social worker if you are in a government-controlled program like Medicaid or the VA.

Q?
Do I need a caregiver?
A.
Patients get sick and sick people need others to care for them.

Sometimes medications have to be administered that make it dangerous for the patient to travel alone. These treatments and their effects are not always predictable in advance, so having a caregiver there is smart insurance. 

The caregiver can sometimes take care of business-office matters while the patient is in treatment, lifting another burden from the patient. But most important, compassionate listening--ears open, mouth shut--always helps.

The role of caregiver most easily fits someone who is already bonded by love and kinship. A spouse is the logical choice. Or a trusted relative. For this person, the depth of the commitment and the intimate nature of the experience pose fewer problems.

Other relationships can work, too. A friend or group of friends may share a patient. Young adult singles and the elderly who have lost mates may find friends that easily and pleasantly slip into caregiver relationships. There are also professional caregivers, though this can be an expensive alternative.

Sometimes the patient needs different caregivers for different parts of the medical experience. Just be certain that the caregiver(s) is strong enough, stable enough and thoughtful enough to stay the course. This person or persons must understand that “caregiver” is not an honorary position. It requires maturity, energy, time, caring, thoughtfulness, and willingness to get your hands dirty.

Q?
Who should I call if I need help with insurance matters?
A.
Two of the first things you must do after diagnosis are to advise your insurance company and your employer. Companies of any size have a health insurance specialist or an employee-assistance professional, usually called an EAP, who is trained to help you go forward. If you work for a smaller company, are self-employed, or retired, call the toll-free number on the policy.

If your health insurance is through some channel other than employment, someone identified in your policy is probably waiting to help you. If not, see your insurance agent.

A high-quality health insurance provider will have a nurse-advocate available to lift large parts of the insurance burden from your shoulders. Stripped down plans and Medicaid make do in horrific ways. 

The ability of people you reach to make beneficial decisions will also vary broadly from insurer to insurer. Just make certain that you are dealing with a decision maker. Any clerk can tell you "no". Try hard not to deal below the level of people who have the power to say “yes”.

Q?
What if my insurance company gives me trouble? Who can help?
A.
Your oncologist may be able to change a policy restriction with a phone call to the company. Your employer (or your broker) may be able to encourage a favorable reading or an exception by your insurance company, as they have experience reasoning with health insurers and bring the clout of a larger piece of business to the bargaining table. All large employers, your hospital and your county health department all have employee assistance professionals, known commonly as EAPs, who can help.

Failing that, you may need to get a cancer-advocacy group to intercede with your insurance company, or help may come from your state insurance commissioner’s office. The National Association of Insurance Commissioners (www.naic.org) provides links to specific state departments of insurance that regulate managed care. From these state offices, you can get information specific to your state. 

Failing all those possibilities, consider going to an experienced independent arbitrator, such as the Patient Advocate Foundation (www.patientadvocate.org) which offers a toll-free hotline (800-532-5274) and will assign a case manager to resolve insurance disputes between all parties. If you choose this route, be reminded that thousands of others are also clamoring for attention, and be prepared to wait, maybe months, for your turn.

The National Coalition for Cancer Survivorship (www.cancercare.org) provides similar assistance through its toll-free number (877-622-7937) and also helps callers locate legal resources to solve insurance problems when the need arises.

Q?
What is an advocate?
A.
A patient advocate acts as a liaison between patients and healthcare providers to help maintain high quality of health care. The patient advocate may be an individual or an organization. 

Patient advocacy organizations are often non-profit and may focus on one aspect of health care or a specific disease. There are also governmental agencies that study and ensure compliance with government regulations or help individuals get information, financial aid, or help with interventions to improve health care. 

Some patient advocates work for the institutions that are directly responsible for the patient’s care. While such a person may appear to be biased in favor of the employer, give them the benefit of doubt. 

There are individuals, organizations and agencies that offer individual patient advocacy services for a fee. Many are affiliated with the Health Advocates Association and have a laudable code of ethics. You may be able to find an individual advocate who can help you, for a fee, at:

• AdvoConnection  www.advoconnection.com
• The Karis Group  www.thekarisgroup.com
• Health Advocate  www.healthadvocate.com

There are doubtless others. Also be aware that there may be a fee charged for services.

Q?
What are clinical trials and should I consider one?
A.
In cancer research, clinical trials are rigorously controlled research studies usually conducted in four phases. They are designed to test the safety and effectiveness of drugs, devices, or treatments in volunteer cancer patients, while protecting the rights and safety of the people who enroll. Before a new treatment can be widely available, it must be proven to be safe, effective and better than current therapies through these scientific studies.

In the United States, clinical trials are conducted under the direction of the Food and Drug Administration, the FDA. Due to the sizable cost and scope of such studies, they are typically sponsored by a governmental organization, perhaps in conjunction with a pharmaceutical or biotechnology company. These studies are often managed by an outsourced partner, such as a contract research organization or an organization from academe.

Myeloma patients are eagerly sought by managers of many clinical trials. As a general rule, rely on the directing oncologist of your case for advice as to which clinical trial to consider and why. Though your doctor may not be directly participating in the clinical trial, you should be assured that someone from your medical team follows every step with your best health interests held highest.

Go to www.tbafoundation.org/treatment.html for a list of organizations that offer free, searchable listings of cancer clinical trials.
Q?
What is latest research into this disease?
A.

Historically, cases of myeloma have been too rare and the cost of effective research too high to justify major research, especially when compared to the demands of lung, breast and other cancers, with orders of magnitude more patients. 

But there has always been some study. And recently, myeloma research has shed new insight in the fight against advanced forms of lung, breast, head and neck, kidney, liver, brain and other cancers. The much larger research budgets for those other cancers now contain growing amounts for study of myeloma.

Until recently, myeloma was thought to be different than other cancers, even in families of cancer with similar characteristics. Links in disease patterns, in genetics and in other fields of study are changing that perception.

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