Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission
Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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Find the Right (Myeloma) Oncologist for You
If you are diagnosed with multiple myeloma, first and foremost, find the right (myeloma) oncologist for you. I say this in general, because of the NYT article linked and excerpted below.
I say this specifically because I am a long-term MM survivor who has worked with 000’s of MM patients since 2004. Feedback from these MM patients has taught me that many oncologists have little if any experience treating multiple myeloma.
Key facts:
- Multiple myeloma is a rare cancer. Less than 2% of all cancers diagnosed in the U.S. annually are for multiple myeloma.
- According to research, 96% of all newly diagnosed MM patients are advanced at stage 2,3. This means that less than 5% of newly diagnosed MM patients are stage 1 meaning early stage cancer. Much different prognosis.
- The vast majority of oncologists prescribe the FDA approved standard-of-care myeloma therapy plan of induction (usually RVDd) followed by an autologous stem cell transplant, followed by low dose maintenance therapy. This is a lot of toxicity.
To add to the advice below from the NYT article:
- Scour the information available- yes, the internet covers a wide spectrum of information about MM. Take a deep breath and learn as much as you can.
- Find a team experienced with your specific cancer. Research confirms that MM patients live longer, on average, when working with a MM specialist not a hematologist (blood cancer) or general oncologist.
- Get a second opinion, and sharpen your questions. Please, please, please, get a second opinion.
- Take stock of your priorities. The 55 year old MM stage 1 patient may have much different priorities than the 75 year old stage 3 MM patient.
Thank you Dr. Durie-
Telehealth has fundamentally changed the doctor/patient relationship where rare blood cancer care is concerned. You can consult with a MM specialist in California, for example, and work with an oncologist is your home town in the east, to get diagnostic testing results, undergo treatment, etc.
My point is that you can find the right (myeloma) oncologist for you by getting a second opinion with a specialist in a different state, find an experienced MM team to create your therapy plan in another stage, and work with an oncologist day to day, in your hometown.
If you are a newly diagnosed MM patient and have questions about how to find the right (myeloma) oncologist for you, email me at David.PeopleBeatingCancer@gmail.com
Thank you,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
How to Find the Right Oncologist for You
““When you’re first diagnosed, you immediately go to the internet, and you can be overwhelmed in short order,” he said. “The more you read about it, the more complicated it gets…”
One of the first and most important choices he had to make was who his oncologist would be. Many of the two million patients diagnosed with cancer in the United States each year get the news from a primary care doctor. Those patients might accept a referral to an oncologist without question. But research suggests that it’s worth considering the choice closely: It can shape the care you receive, your satisfaction with the treatment and your chances of survival…
Scour the information available.
Not everyone has a choice of oncologists. There are fewer providers in rural areas, and patients must travel farther to reach them. Insurers may only cover certain clinicians and hospitals. And patients from certain populations have less access to oncologists for a range of reasons, which may affect the care they receive…
There are resources to help you search for oncologists, too, including a U.S. News & World Report directory that lets you sort by location, patient reviews and accepted forms of insurance…
Find a team experienced with your specific cancer.
Look for an oncologist who frequently treats patients with diagnoses similar to yours. Research has long shown that when doctors perform certain procedures more often, their patients have better outcomes…
Dr. Timothy Pawlik, the chair of the surgery department at Ohio State University Wexner Medical Center, said he only treats a handful of cancers. “You want someone with depth, not breadth,” Dr. Pawlik said. That way, he explained, “the patient may have a rare cancer, but it’s not rare to that doctor…”
Get a second opinion, and sharpen your questions.
Mr. Lyle hesitated to get a second opinion for fear of offending the first doctor he’d seen. But he ultimately chose to do so, a step many experts recommend…
Research suggests a second opinion can also lead to clinically meaningful changes in treatment. One 2023 study of 120 cancer patients found that a for a third of patients, a second opinion led to treatment changes that yielded better outcomes.
Many had received evidence-based care from their first doctor but decided after a second opinion to scale back treatments that might have been unnecessary and had harmful side effects…
Take stock of your priorities.
It’s understandable to want to focus on outcomes and survival rates. But it’s also important to remember that your quality of life can be affected by the types of treatment you seek.
Consider how aggressively you want a provider to approach your treatment. This can vary by provider. One recent study found some oncologists prescribed chemotherapy and other systemic treatments up to the month their patients died, whereas others discontinued those treatments as patients neared the end of life…
Once you understand what’s most important to you, make your preferences and values known to your clinician in what’s known as a goal-of-care conversation. This is also an opportunity to ask what to anticipate in terms of symptoms, treatment and the effect on your quality of life…