1) Choose Your Doctor Carefully
Hematologists and oncologists are the primary doctors involved with multiple myeloma and often work in collaboration with stem cell transplant physicians. Pick your primary hematologist/oncologist carefully, rely on people you trust including nurses and other health care professionals who make help with recommendations. Make sure your doctor is someone you feel comfortable interacting with and shares your goals. It’s also important he/she has a specific interest in multiple myeloma and has access to clinical trials.
2) Be Your Own Advocate
Inform yourself about multiple myeloma before you see your doctor. Make sure you understand your stage, range of treatment options, and role of precision medicine. All treatment is discussed based on stage and testing for precision medicines. You can begin to learn about multiple myeloma here or receive a helpful newsletter.
An on line community can be a great resource to help find a doctor as well as to share information and learn about treatment choices with other individuals in your situation. CancerConnect will link you to multiple myeloma patients being treated at leading cancer centers.
4) Bring written questions to your visit
A doctor’s visit is stressful, it is much easier to bring a list of written questions to ensure they all get answered and none are forgotten. Bring someone with you to take notes or consider using a recorder so you can listen and engage your doctor carefully. Being able to “replay the conversation is very helpful.
5) Be organized
It’s not unusual for patients to be treated by multiple doctors. To stay on top of the treatment routine, it’s critical to record notes from doctor appointments, questions/answers for your physician, dates of appointments, test results blood cell counts, medications and dosing schedules, prescription refills and other information.
6) Make sure you understand the treatment outcomes.
Your doctor should be able to tell you what you chance of survival/cure is if you elect to receive no treatment then explain how each proposed treatment improves upon that outcome. If you don’t know the expected outcome of no treatment vs the proposed treatment how can you possibly decide what to do?
7) Ask about the role of precision medicine
Unlike traditional chemotherapy, which attacks any cell in the body that is rapidly dividing, precision cancer medicine aims to target specific genetic alterations that allow cancer cells to grow. Multiple myeloma often results from abnormal genes or gene regulation. The strategy of precision cancer medicine is to define abnormalities at the most basic genetic level. These abnormalities in the DNA are called genomic alterations and they are responsible for driving cancer cell growth. Once the abnormality is identified, genomic tests are created to measure the specific genes in multiple myeloma that are abnormal or are not working properly. By identifying the genomic changes and knowing which genes are altered in a patient, cancer drugs that specifically attack that gene (or the later consequences of that gene) can be used to precisely target the cancer and avoid affecting healthy cells. Visit www.oncoprecison.org
8) Ask about clinical trials
Ongoing research is being conducted to find new treatments for multiple myeloma. When new treatments are discovered, they must be developed in humans. By learning about clinical trials you can identify opportunities that advance the treatment of multiple myeloma and possibly benefit your personal prognosis. Learn more about clinical trials.
9) Strongly consider a second opinion.
The more you can learn about your diagnosis and your treatment options, the better chance you have of receiving the best treatment. Getting a second opinion will help you understand ALL available treatment options, and provide reassurance to you and your family that you are receiving the most appropriate therapy.
10) Make sure you have an overall care coordinator
Everyone needs a single point of contact is responsible for your overall care. This can be your oncologist, your primary care doctor, or a specialized nurse navigator. Without a “quarterback” the potential for miscommunication, and frustration is considerable. Make sure you have one primary contact that is your advocate!
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