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Multiple Myeloma & Treatment Options

Multiple myeloma is a rare form of cancer that occurs in the plasma cells. Read real experts talk about what myeloma is, its diagnosis and treatment options including new CAR-T cell therapy, proteasome inhibitors and more.

Multiple Myeloma and
Treatment Options

Not all cancers are created equally. Even though they might be similar in nature – i.e. uncontrolled division of abnormal cells in a part of the body – they’re not all treated the same way.

Myeloma is a cancer of the plasma cells that sees about 200,000 US cases a year, according to Dr. Rafael Fonseca of Mayo Clinic.

Keep reading to learn about multiple myeloma, its treatment and prognostic information from real experts.


Multiple Myeloma Introduction

“Multiple myeloma belongs to the group of diseases we think about when we think about blood cancers. Specifically, myeloma is a form of adult bone marrow cancer that comes about when plasma cells convert into malignant cells. 

Under normal circumstances, plasma cells help protect our bodies. They produce the antibodies that give us immunity. Occasionally, those cells become malignant, and that’s what we call myeloma,” Dr. Fonseca says.

Dr. Fonseca is a hematologist, professor of medicine and chair of the department of internal medicine at Mayo, and he has more than 25 years of experience. He explains myeloma as a disease with three sub-types. MGUS, smoldering multiple myeloma and active multiple myeloma.

Types of Multiple Myeloma

MGUS – Monoclonal Gammopathy of Undetermined Significance

It may be helpful to think of MGUS as tier 1. Generally speaking, patients with MGUS won’t have any outward symptoms, and it’s actually not too rare. More than 2% of adults over 50 have it.

“That condition is when there’s very discrete growth of the plasma cells, usually that they’re going to be less than 10% of the cells in a person’s bone marrow,” Dr. Fonseca says.

Smoldering Multiple Myeloma

There’s a condition that can be considered tier 2. Smoldering multiple myeloma happens when the number of myeloma cells present is more than 10% but not enough for you to be symptomatic.

He says, “It will remain as such for as long as there is no evidence of complication.

Once we see that someone has complications, that’s when we say they have multiple myeloma, active myeloma or simply, ‘myeloma.’”

Dr. James Berenson is also a myeloma specialist, who runs his own private practice and has more than 35 years of experience. He reiterates this distinction concerning plasma cells.

“Plasma cells normally make lots of different kinds of antibodies and make up only about half a percent of your marrow. With myeloma, they make a lot larger of a percentage, and they’re all one type and make one antibody,” he says.

When this number increases, there’s a fine line between smoldering and active myeloma. Researchers are trying to find new ways of distinguishing smoldering and active myeloma groups. Smoldering myeloma patients might start noticing symptoms like bone issues and fractures or kidney problems since the antibody can be toxic to the kidneys.

“We think there are some patients who have more advanced cases of smoldering multiple myeloma who should go ahead and start treatment,” Dr. Fonseca says.

»MORE: Smoldering Myeloma Patient Stories

Active Myeloma

Active myeloma, multiple myeloma or myeloma is when a patient has enough myeloma cells that they start having symptoms. These can include worsening bone problems like fractures, a history of back pain, unexplained anemia or advanced kidney problems like renal failure.

This is when a patient will most definitely need treatment. So, what are the newest options for myeloma treatment?


Treatment Options

There are several different newer types of treatments for multiple myeloma, and there are always new clinical trials being conducted.

Chemotherapy for Myeloma

A common treatment for multiple myeloma might be the chemotherapy regimen: RVd – Revlimid, Velcade and dexamethasone. This is still the standard of care (along with autologous stem cell transplant) in new cases of multiple myeloma, according to Mayo Clinic.

RVd chemotherapy can cause neuropathy, GI issues like constipation or diarrhea, nausea, fatigue, and in more serious cases, blood clots. Dexamethasone is a steroid, and many patients recall feeling anxious or being unable to sleep well.

Stem Cell Transplants for Myeloma
In favor of SCT

Dr. Nina Shah, myeloma specialist at University of California, San Francisco (UCSF), says she considers the stem cell transplant as part of the standard of care for newly-diagnosed multiple myeloma patients. She acknowledges not all doctors agree, but she favors doing transplants.

The reason for that is that while those three drugs at the upfront, the Velcade, Revlimid, and dexamethasone, are like the soap and sponge for cleaning a dirty pot.

But the melphalan, which is the transplant drug, is the Brillo pad. It really digs in and gets the deep myeloma cells that you couldn’t get. It’s another way of being smarter than the myeloma.

Dr. Shah describes the transplant process as having two parts, starting with a stem cell collection. “Since we can’t give you a very high dose of chemotherapy without damaging normal cells, before we even give that dose of chemotherapy, we have first to collect blood stem cells so that your blood will recover from having that dose of chemotherapy.

This is an outpatient procedure and can take about a few days. We put a big catheter, usually in your chest wall, or a big IV in your arm. Then we take out a bunch of blood and filter out those stem cells after having given you some medication to get those to your blood.

Usually about a week for it between the injections and the procedure. Then after that, we do part two, which is the actual transplant. That’s when patients are, in our case, admitted to the hospital, although you can do it as an outpatient.”

Next comes one dose of chemotherapy, followed two days later by a replacement with the stem cells, which are thawed and given like a blood transfusion. Dr. Shah notes there are side effects that usually impact patients over the next two weeks or so:

  • nausea
  • vomiting
  • diarrhea
  • hair loss
  • infections.

Patients will also require blood transfusions, as the blood system was “obliterated” and time is required for the stem cells to grow and repopulate.

Not using SCT

Dr. Berenson says he no longer believes in stem cells transplants and bone marrow transplants for myeloma. He does not recommend them for his patients anymore.

“You’ve got to kill the myeloma, not the patient. Transplants involve a lot of non-specific chemo that does a lot of collateral damage. It doesn’t make people happy or give them a good quality of life. 

Most doctors do still recommend them, but I certainly do not. I think we have better treatments that are better tolerated and offer a better quality of life. I don’t want people to have to go through holy hell with no upside,” Dr. Berenson says.

Newest Drug on the Market for Myeloma

There are newer types of treatments coming out. The newest treatment that has gained FDA approval for myeloma is a drug called Selinexor.

“Selinexor is supposed to be a blocker of a pump that moves certain proteins from a cell nucleus. The premise upon which this was developed is if you can increase the concentration of certain proteins that act as tumor suppressors, perhaps that would allow cells to signal and divide more until they die,” Dr. Fonseca explains.

Clinical Trials for Myeloma

Clinical trials are a great option if your current treatment isn’t working. A clinical trial involving adding Darzalex to a treatment regimen showed great increase in patient response.

There are currently more than 40 clinical trials involving CAR-T cell therapy for multiple myeloma. CAR-T is already approved and commercially available for other forms of cancer like certain leukemias and lymphomas, but it’s only available in trials for myeloma. Dr. Fonseca breaks down CAR-T cell therapy in layperson’s terms:

“CAR T therapy is when you take out one of those T cells that we have in our body. They can collect them from your blood and then they send them elsewhere. They send them to a factory to be genetically engineered.

They become assassins who target myeloma cells, and then they’re shipped back to the patient and given back to the patient in their vein. Essentially, you’re taking T cells, training them to kill myeloma cells and giving them back.”

If you’re interested in more of the newer options, there are also proteasome inhibitors. You can research them more and ask your doctor if they might be an option for you.

“Pathway inhibitors stop pathways that grow myeloma or makes the soil in which the myeloma grows less hospitable. It makes it like a barren desert instead of fertile ground for the myeloma,” Dr. Berenson says.


Prognostics from Real Experts

Dr. Fonseca urges patients to think about how far cancer research has come and how far it will go:

“When I first started in myeloma, we would tell patients they were looking at 2 or 3 years at best and we had almost no drugs. Now, the prognosis is measured in several or many years and sometimes even decades. 

I remind patients of one thing all the time: if I see you today in 2019 and the life expectancy is 10 years, how will we treat myeloma in 2029? That is what we call the valley of options because with all the research being done, they will have options at that point that don’t exist today.”

Dr. Berenson agrees. He tells patients not to get caught up in the numbers the internet might through in your face. Ask a real doctor about your treatment plan.

“Don’t get depressed by a lot of the prognostic news that’s going to make you feel like you’re going to die in five minutes. That’s not true anymore.”


Final Words from Our Experts

“If your doctor doesn’t want to look into treatment options that make you more comfortable, find someone who is willing. You don’t have to stick with that doctor. You don’t have to go with their approach.” – Dr. James Berenson, M.D.

“Don’t give up. There’s no time to be nihilistic in myeloma. I will always respect patients’ choices, but we have a lot of good opportunities, and there is a very good possibility that a person’s life can be extended very significantly with effective treatment. “ – Dr. Rafael Fonseca, M.D.


Multiple Myeloma Patient Stories

Explore our myeloma stories below, where patients describe first myeloma symptoms, what treatments they underwent, and navigating life with cancer.

Active Myeloma
Multiple Myeloma Patient Stories: Relapsed/Refractory

Clay D., Multiple Myeloma



Diagnosis: Multiple myeloma
Cancer Details:
Early stage multiple myeloma usually causes vague symptoms, making it difficult to diagnose
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Multiple Myeloma Stories: Light Chain, Stage 2 | Carlos’ Patient Story

Carlos C., Light Chain Multiple Myeloma



Diagnosis: Multiple myeloma, light chain
Cancer Details:
Early stage multiple myeloma usually causes vague symptoms, making it difficult to diagnose
1st Symptoms:
Back pain and spasms
Treatment:
Back surgery to fuse T1 and T2, chemotherapy (RVD) and stem cell transplant
...
Multiple Myeloma Stories: Active Myeloma, Stage 3 | Jude’s Patient Story

Jude A., Multiple Myeloma, Stage 3



Diagnosis: Multiple myeloma, stage 3
Cancer Details:
Early stage multiple myeloma usually causes vague symptoms, making it difficult to diagnose
1st Symptoms:
Pain in back, hips and ribs; difficulty walking
Treatment:
Bilateral femoral osteotomy, reversal due to infection; chemotherapy
...
Multiple Myeloma Stories: Active Myeloma, Stage 3 | Melissa’s Patient Story

Melissa V., Multiple Myeloma, Stage 3



Diagnosis: Multiple myeloma, stage 3
Cancer Details:
Early stage multiple myeloma usually causes vague symptoms, making it difficult to diagnose
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...
Multiple Myeloma Stories: IgG Lambda, Heavy Chain, Stage 3 |  Scott’s Patient Story

Scott C., Multiple Myeloma, IgG Lambda, Stage 3



Diagnosis: Multiple myeloma, IgG lambda
Cancer Details:
Early stage multiple myeloma usually causes vague symptoms, making it difficult to diagnose
1st Symptoms:
Pain in hips and ribs, night sweats, weight loss, nausea
Treatment:
Clinical trial, chemo, kyphoplasty, stem cell transplant
...
How is Multiple Myeloma Diagnosed | The Patient Story
Explore for answers to the basic questions of multiple myeloma, from top specialists, Dr. Rafael Fonseca of Mayo Clinic and Dr. Nina Shah of University of California, San Francisco. ...
Multiple Myeloma Clinical Trials | The Patient Story
Top myeloma expert, Dr. Rafael Fonseca, share the basics of what clinical trials are, how they work, and why they are so important in the field of multiple myeloma. ...
Smoldering Myeloma
Multiple Myeloma Stories: Smoldering Multiple Myeloma (SMM) | Maui Bigelow

Maui B., Smoldering Myeloma



Diagnosis: Smoldering myeloma
Cancer Details:
Smoldering myeloma is pre-symptomatic or pre-treatment multiple myeloma
1st Symptoms:
Inflammatory eye disease, uterine bleeding
Treatment:
N/A
...
How is Multiple Myeloma Diagnosed | The Patient Story
Explore for answers to the basic questions of multiple myeloma, from top specialists, Dr. Rafael Fonseca of Mayo Clinic and Dr. Nina Shah of University of California, San Francisco. ...
Multiple Myeloma Clinical Trials | The Patient Story
Top myeloma expert, Dr. Rafael Fonseca, share the basics of what clinical trials are, how they work, and why they are so important in the field of multiple myeloma. ...

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