Getting the best treatment is dependent on these actions.
Getting a diagnosis like multiple myeloma can be overwhelming and send you down a hole of spiraling thoughts: What is multiple myeloma? How will my life be from here on out? Where do I go from here?
“It’s very important when you’re diagnosed with [multiple] myeloma to take certain steps,” says Adriana Rossi, MD, associate clinical director of the Myeloma Center at Weill Cornell Medicine and NewYork-Presbyterian.
STEP #1: Find the right treatment center and the right doctor.
Choosing the right treatment center and team is critical to getting the best treatment possible. “Multiple myeloma is still considered a rare disease, so I think it’s important to at least seek an option at a center that sees a lot of myeloma patients,” says Dr. Rossi.
Ideally, a specialist who focuses on multiple myeloma will be aware of the latest research and treatment options.
STEP #2: Ask questions and make sure you understand your diagnosis.
It’s important that you understand your diagnosis completely. Ask questions, write down the answers, and repeat them back to your doctor. “I think as physicians we think we’ve done a good job of explaining, but until you really understand it, we haven’t done our job,” says Dr. Rossi. “So ask questions until it makes sense to you.”
Sample questions to ask your doctor include:
What kind of myeloma do I have?
What stage is the myeloma?
What symptoms can I expect?
What’s your recommended treatment plan and why?
What side effects can I expect?
STEP #3: Work with your doctor to find the right treatment plan.
It’s very important to have good communication with your doctor, especially during the first cycle of a treatment plan, says Dr. Rossi. “[If] a treatment either stops working or has side effects that the patient finds intolerable, that’s a reason for us to find a new line of therapy,” she says.
“If we don’t know [that] you’re having a symptom or you’re having a hard time with a medication, we can’t do anything about it,” says Dr. Rossi. “Often there are different options for treatment.”
Adriana Rossi, MD, is the Associate Clinical Director of the Myeloma Center at Weill Cornell Medicine and NewYork-Presbyterian.
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It's very important when you're diagnosed
with myeloma to take certain steps.
00:00:06,890 --> 00:00:10,239
00:00:10,239 --> 00:00:14,587
Myeloma's still considered a rare disease,
so I think it's important to at least
00:00:14,587 --> 00:00:17,994
seek an opinion at a center that
sees a lot of myeloma patients.
00:00:17,994 --> 00:00:21,647
So seek a specialist even if it's just for
an opinion, and
00:00:21,647 --> 00:00:26,490
they can then guide your local
oncologist in the day-to-day therapy.
00:00:26,490 --> 00:00:29,420
It's important that the patient
understand their diagnosis.
00:00:29,420 --> 00:00:33,360
So many times I think as physicians, we
think we've done a good job of explaining
00:00:33,360 --> 00:00:36,680
but until you really understand it,
we haven't done our job.
00:00:36,680 --> 00:00:39,740
So ask questions until
it makes sense to you.
00:00:39,740 --> 00:00:43,100
Find out what kind of myeloma you have.
00:00:43,100 --> 00:00:46,850
What are the expected
symptoms from the disease?
00:00:46,850 --> 00:00:49,400
What's the planned treatment and why?
00:00:49,400 --> 00:00:51,320
Given that we have so many options,
00:00:51,320 --> 00:00:54,960
why does the doctor think this
one is better than the next?
00:00:54,960 --> 00:00:58,710
So I think it's very important to maintain
close communication with your physician
00:00:58,710 --> 00:01:01,700
especially during that first
cycle of a new therapy
00:01:01,700 --> 00:01:04,320
as your body gets used to
not only the treatments, but
00:01:04,320 --> 00:01:07,020
the other medicines that we
use to prevent side effects.
00:01:08,020 --> 00:01:12,630
And being in this continuous evolving
conversation where should a treatment
00:01:12,630 --> 00:01:17,420
either stop working or have side effects
that the patient finds intolerable,
00:01:17,420 --> 00:01:19,910
that's a reason for
us to find a new line of therapy.
00:01:19,910 --> 00:01:22,580
And it's important that
the patients always tell us things.
00:01:22,580 --> 00:01:26,470
I think an absurd thing is a patient
saying I don't wanna bother you.
00:01:26,470 --> 00:01:28,570
So, if we don't know
you're having a symptom or
00:01:28,570 --> 00:01:32,390
you're having a hard time with a
medication, we can't do anything about it.
00:01:32,390 --> 00:01:36,420
So, communicating with your physician,
making sure that they know if you're
00:01:36,420 --> 00:01:40,016
having side effects or if a drug is
not agreeing with you, often there
00:01:40,016 --> 00:01:43,869
are different options for treatment or
ways to mitigate the toxicities.
00:01:43,869 --> 00:01:50,758
Plasma Cell Neoplasms (Including Multiple Myeloma) Treatment–Patient Version. National Cancer Institute. (Accessed on June 25, 2019 at https://www.cancer.gov/types/myeloma/patient/myeloma-treatment-pdq)
Patient education: Multiple myeloma symptoms, diagnosis, and staging (Beyond the Basics). UpToDate. (Accessed on June 25, 2019 at https://www.uptodate.com/contents/multiple-myeloma-symptoms-diagnosis-and-staging-beyond-the-basics)
Multiple myeloma treatment (Beyond the Basics). UpToDate. (Accessed on June 25, 2019 at https://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics)