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Myeloma is a blood cancer.
It arises from a cell called a plasma cell, which is an important part of one’s normal
immune system producing antibody.
The importance of symptoms of diagnosis are critical obviously for diagnosis and probably
initiating treatment to reverse the symptoms.
But what typically happens is patients are identified with a high serum protein or some
other end organ function of their disease.
for example that they can have a low hemoglobin, or they’ll be slightly anemic, and that
can then trigger an investigation that finds the disease.
And it starts as what’s called a Monoclonal Gammopathy of Uncertain Significance, then
becomes a smoldering process and then becomes an active disease.
Unfortunately when it’s in active form it can be very dangerous, it requires prompt
therapy, and until recently unfortunately it used to have a poor prognosis, but fortunately
over the last 10-15 years the outlook has been transformed favorably by the advent of
what we call novel therapies.
It’s a time for great hope in myeloma.
You know, when you’re diagnosed with an incurable cancer, you sometimes use the word,
incurable, with terminal, and you hear the word, terminal, you think you’re going to
die tomorrow, and that’s how I felt when I was newly diagnosed.
But as I got over the shock of that initial diagnosis I realized that many people are
living very long lives with multiple myeloma.
I have some friends who were diagnosed over 20 years ago, and seeing these patients, you
know, seeing these people still alive and active, and enjoying life, I know that being,
even being diagnosed with an incurable, terminal, cancer, doesn’t mean your life stops, you
can still live your life, and I’m still living mine.
Multiple myeloma is the correct description because it’s it multiple sites of these
aggregate plasma cells within the bone and bone marrow.
So, hence the term multiple myeloma.
Myeloma arises actually in the lymph nodes but moves into the bone marrow.
And when it moves into the bone marrow it grows and proliferates.
It crowds out normal hematopoiesis, so normal blood cells are suppressed including red blood
cells, white cells, and platelets, and it also attacks bone, what we call lytic bone
lesions.
The protein that it produces can not only thicken the blood but it can also damage the
kidney and it can produce other symptoms.
And finally, and most important, myeloma is highly immunosuppressive, so in that context
it can produce a profound immunosuppression making the patient vulnerable to infections
and also compromising their ability to fight any kind of major infectious or other issue.
As a result of the effects it has on bone, it can also produce high levels of a chemical
called calcium, and one of the presenting features in addition to renal failure can
be what’s called hypercalcemia.
When you’re diagnosed with myeloma, it’s important to know if you’re experiencing
any of the CRAB symptoms.
CRAB is an acronym that myeloma specialists use, and C means if you have any high calcium
levels, the R means if your renal function is working or not, the A is for anemia, the
B is for bone pain and bone disease, and some myeloma specialists include an I for reoccurring
infections.
And if you’re experiencing any of those symptoms when you’re diagnosed, you will
begin myeloma treatment almost immediately.
Some of the things someone newly diagnosed with multiple myeloma should know, is first
to relax, keep calm, and get a game plan together.
Although being diagnosed with an incurable cancer can be devastating, there are many
treatment options for someone newly diagnosed.
Having myeloma is kind of like running a marathon, not a sprint.
You need to educate yourself, so that you can ask questions and make informed decisions.
And you need to gather together a network of support, people who will be there to help
and guide you every step along the way.
The first thing that a patient should think about is that there are numerous treatment
options available.
We now realize that one size does not fit all.
So it’s important for patients to access top centers, top sites, and have the best
expert opinions in guiding their therapy because it’s becoming increasing sophisticated and
nuanced, how to best manage their disease.
And to decide which treatment is best for you, you need to have a discussion with your
doctor.
You need to know what kind of myeloma you have.
You need to know if it’s a high-risk type of myeloma, standard risk, or an intermediate
risk.
You need to know if you have any chromosomal abnormalities, and you need to know some quality
of life issues, that you’re willing to trade off.
Someone with diagnosed as multiple myeloma has a lot of treatment options available to
them.
First, they could consider drug therapy, stem cell transplantation, or clinical trials.
You want to know the risk and benefits of each of those treatment options.
You might ask your doctor what treatment plan they would suggest that you start with, and
why they suggest that treatment plan for you.
There is a lot of exciting research happening in the area of multiple myeloma.
Since I was diagnosed in 2008, there has been seven new drugs approved, that’s kind of
amazing.
And there are many, many drugs in the pipeline for myeloma.
I think clinical trials in myeloma are tremendously important, because we’re trying to continuously
advance the field and some of the most exciting developments in the field include the use
of immunotherapeutic strategies early and that can only be accessed in the context of
a clinical study.
Furthermore we’re also looking at strategies to best place transplant, does transplant
now belong initially in all patients or should it be kept in reserve, and studies are actively
addressing that at the moment.
Everyone should be considering a clinical trial as one of their treatment options, whether
you are newly diagnosed or relapsed refractory.
There are multiple resources for patients with myeloma.
Cancer.Net is one excellent source to go to, I should mention there’s also the IMF and
the MMRF both of who provide fabulous patient advocacy and information, in particular around
research opportunities.
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