As the founder of the Myeloma Crowd, I have the opportunity to talk with myeloma patients several times per week and I love the chance to provide them with advice to help ease their myeloma journey.
If there were a single piece of advice I could give to all myeloma patients, it would be to have a myeloma specialist on your team!
Why? Because seeing a myeloma specialist can add years to your life.
The majority (80%) of multiple myeloma patients are diagnosed in community oncology centers where they meet with an oncologist (cancer doctor) or a hematologist (blood cancer doctor) who are usually kind, caring and smart. After doing some kind of basic testing to verify that you have myeloma, they put together a treatment protocol and start you on treatment. As a patient, you are likely to follow their advice and not ask questions.
This would be fantastic if multiple myeloma were an easy, cookie-cutter cancer to treat, but it's not. These talented doctors are also treating patients with lung cancer, breast cancer, kidney cancer, head and neck cancer, etc. or lymphoma and leukemia. It is likely they are treating fewer than 5 myeloma patients annually.
Many do not perform adequate genetic, imaging or even blood testing at diagnosis - and this information is absolutely essential in selecting a treatment protocol. For example, if you have higher risk genetic features, you should receive more aggressive treatment from the start. Once you begin treatment, this genetic information can be lost until relapse. According to Dr. Guido Tricot, "If you want to win the war, you must know your enemy."
Because the doctors are treating more than one type of cancer, they are less likely to know about the latest advances in myeloma. Ola C. Landgren, MD, PhD, Chair of the Myeloma Service at Memorial Sloan Kettering Cancer Center said:
"I used to be able to go to myeloma conferences every two years and get up-to-speed on myeloma therapies. No more. Now, every six months isn't close to enough."
Dr. Betsy O'Donnell of Massachusetts General Hospital noted on OncLive.
"I always liken the treatment of multiple myeloma to a chess game where you have a certain number of pieces. Those pieces or players operate a little bit differently. You have to be strategic about how you use them. There's only a certain number of them. Thinking carefully about how we employ therapies that we have until we are curing myeloma is very important."
There are over 15 approved myeloma therapies and they are commonly used in doublet, triplet or quad combinations. Knowing what to apply, when and for which patient in an optimal way takes deep skill and experience. Each myeloma patient has on average 5 unique genetic myeloma clones at diagnosis and the genetics can change over time with treatment. Personalizing care for each patient is complex!
I was diagnosed by a general oncologist who was seeing fewer than 5 myeloma patients per year. The myeloma specialist up the street at the academic cancer center (who my first doctor told me NOT to see) was treating 600 myeloma patients per year. The pattern recognition alone from the larger patient set was enough to convince me that seeing a specialist was essential. My initial decision to switch care providers to the myeloma expert is one I have never regretted.
The challenge in myeloma is that what you do as your first treatment really matters. Your first "line of therapy" (which could include several treatments like your induction treatment, a stem cell transplant and maintenance therapy) will provide your longest remission.
To Dr. O'Donnell's point, if we start with a weak myeloma therapy (pawns), our myeloma is more likely to relapse more quickly, making it harder to treat over time.
There is clear data from the Mayo Clinic and the University of North Carolina showing that you live longer if you see a myeloma specialist.
Many myeloma patients think that if they have a myeloma specialist on their team then they have to receive their weekly care or infusions at the academic center too. This is not true.
You can consult with a myeloma specialist when you are newly diagnosed and then receive care from a local facility. The myeloma expert can work with your local doctor to administer the protocol defined by the myeloma specialist. Your local hospital can provide the infusions (chemo, bortezomib, carfilzomib, daratumumab, isatuximab, etc.) If you are considering stem cell transplant, make sure the transplant center is experienced at stem cell transplant.
It's also a good idea to visit with the myeloma specialist anytime you need to make a change in your treatment.
We believe that it is so important to consult with a myeloma specialist that we created an online directory of the top myeloma specialists at academic centers across the world. Doctors in this directory both treat myeloma patients and perform academic research. To be included they must treat over 50 myeloma patients per year.
We hope that you add a myeloma specialist to your team to help you best navigate your myeloma, help you understand the best treatment and your clinical trial options.
Find a Myeloma Specialist today on the Myeloma Crowd website!
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.