A cancer diagnosis like multiple myeloma can often invoke questions such as, "How long will I live with this disease?" or "What can I expect the quality of life of my loved one to be?" 

These are important and valid questions that deserve answers. Unfortunately, with a cancer like multiple myeloma, it's not always as simple as it might seem. In metastatic cancers, it's easier to correlate the prognosis of the patient with the stage of cancer they are diagnosed with, but in myeloma, the stage of diagnosis doesn't matter as much as some might expect. 

Dr. Rafael Fonseca, a renowned myeloma specialist, shared in 2019 that many of his patients were living for more than ten years with their multiple myeloma. Unfortunately, he acknowledged, those who have higher risk myeloma are only living around three to five years.

However, since 2019, many exciting therapies have been approved for relapsed/refractory myeloma patients, with many high-risk patients finding success with CAR T therapy, bispecifics, and other novel therapies that have been introduced.

While the prognosis for high-risk myeloma patients is still not as optimal as it is for those with standard-risk myeloma, the hope of increasing their longevity and quality of life is higher today than it was just a few years ago.

What Are the Prognosis and Life Expectancy for Someone with Myeloma?

Let's begin with the word prognosis. 

According to the Merriam-Webster dictionary, prognosis means "the prospect of recovery as anticipated from the usual course of disease or peculiarities of the case". 

In other words, knowing one's multiple myeloma prognosis would give them a glimpse into how well they will live with the disease and how likely they are to make a full recovery. 

Now, while there is no current cure for multiple myeloma (although we truly are getting closer as time goes by), the longevity of myeloma patients and their quality of life has significantly increased even within the last 10-20 years. 

The prognosis and life expectancy for someone with multiple myeloma can vary widely depending on various factors including the individual's age, overall health, the stage of the disease, and the specific genetic and molecular characteristics of the cancer cells. 

Advancements in treatment options have improved outcomes for many patients, and while multiple myeloma is generally considered incurable, many people manage the disease and live relatively normal lives for an extended period of time. A multiple myeloma diagnosis is no longer a death sentence. 

Some general factors to consider:

1. Staging and Risk Stratification: Multiple myeloma is often staged using the Revised International Staging System (R- ISS), the standard-of-care stratification model, which takes into account three serum biomarkers: beta-2-microglobulin, albumin, and lactate dehydrogenase (DHL), and high-risk chromosomal abnormalities detected by interphase fluorescence in situ hybridization (FISH) performed on a bone marrow sample.   
2. Treatment Advances: As stated above, over the years, there have been significant advancements in the treatment of multiple myeloma. These include chemotherapy, immunomodulatory drugs, targeted therapies, stem cell transplantation, and more. The specific treatment approach will depend on the individual patient and the characteristics of their disease.
3. Prognosis: The prognosis can vary. Some individuals have slower-growing forms of myeloma that can be managed for many years, while others may have more aggressive forms that progress more quickly. The median survival rate (the point at which half of patients are still alive) has improved over the years and can vary from a few years to over a decade.
4. Life Expectancy: Again, this varies significantly based on individual circumstances. Some patients with favorable prognostic factors and good responses to treatment can live for many years, even decades. On the other hand, more advanced or aggressive cases may have shorter life expectancies. 
5. Monitoring and Follow-up: Regular monitoring is crucial in managing multiple myeloma. This involves blood tests, imaging, and other evaluations to assess the response to treatment and to detect any signs of progression.

Remember, staging in multiple myeloma is different from staging in most other types of cancer, including metastatic cancers. In most cancers, staging is a standardized system that assesses the extent of the cancer's spread within the body, often involving the primary tumor size, lymph node involvement, and distant metastasis.

This staging system helps determine the prognosis and, in general, guides treatment decisions. However, multiple myeloma has a unique staging system due to its nature as a bone marrow-based cancer.

It's important for individuals with multiple myeloma to work closely with a specialized myeloma medical team experienced in treating the disease. They can provide personalized information about prognosis and treatment options based on the individual's unique situation. 

Can People Live 20 Years or Longer with Myeloma?

Yes, it is possible for individuals with multiple myeloma to live 20 years or even longer, especially with the advancements in treatment options and supportive care that have been made in recent years. I personally know two patients who have lived with the disease for twenty years now. 

However, the prognosis and life expectancy for multiple myeloma can vary widely depending on various factors, including the individual's age, overall health, the stage of the disease at diagnosis, the specific genetic and molecular characteristics of the cancer cells, and how well they respond to treatment.

What is the Longest-Known Survival with Multiple Myeloma?

While this question seems pretty straightforward, it's actually quite a difficult question to answer. 

The longest-known survival of multiple myeloma is difficult to pinpoint precisely, as individual cases can vary widely and medical records may not always be available or complete. However, there have been cases reported where individuals with multiple myeloma have survived for decades. As noted above, some patients have lived well beyond 20 years since their initial diagnosis.

It's important to note that these cases of exceptionally long survival are likely to be influenced by a combination of factors, including:

1. Early Diagnosis: Catching the disease in its early stages before it has progressed significantly can lead to better outcomes and longer survival.

2. Effective Treatment: Individuals who have responded well to treatments and achieved durable remissions are more likely to experience longer survival.

3. Advancements in Treatment: The development of new treatment options and therapeutic approaches has significantly improved the outlook for multiple myeloma patients over the years.

4. Supportive Care: Improved supportive care measures help manage treatment side effects and maintain overall quality of life.

5. Genetic and Molecular Factors: Some individuals may have specific genetic or molecular characteristics of their disease that make it more responsive to treatment. Those with high-risk genetic translocations, deletions, or additions of their disease often have a harder time achieving and maintaining deep responses. 

6. Individual Variation: Each person's response to treatment and disease progression can vary widely, making long-term survival possible in some cases.

Does Multiple Myeloma Have a Poor Prognosis?

While it depends on the factors listed above, such as overall fitness, genetic make-up of the disease, age, and access to specialized care, all things considered, multiple myeloma does not always have a poor prognosis.

Its prognosis has improved so much that since 2010, when the standard life expectancy for most patients was 3-5 years, specialists now consider the median time with the disease for those who are at standard risk to be at least a decade. 

If you're older, frail, or have two or more high-risk genetic factors, the prognosis still is not horrible. With many patients living 3-5 years, treatments continue to be approved, and combinations continue to be effective for this patient population. 

Is Myeloma Considered A Terminal Illness?

Because there is no cure, yes, it is considered terminal. However, because of the longevity of the majority of their patients, some doctors have started calling it a chronic disease amongst themselves. 

It's important to note that multiple myeloma is not necessarily always classified as a "terminal illness" in the traditional sense. The term "terminal illness" often implies that the disease is expected to lead to death within a relatively short period of time.

However, multiple myeloma varies widely in its progression and response to treatment, and many individuals can live for years after their diagnosis.

What Are the Stages of Myeloma?

Multiple myeloma is staged using the (Revised) International Staging System (R-ISS), which considers certain laboratory values to assess the severity and prognosis of the disease. The R-ISS categorizes multiple myeloma into three stages:

1. Stage I: In this stage, the beta-2 microglobulin (β2M) level in the blood is below 3.5 mg/l, and the albumin level is normal (above 3.5 g/dl). Lactate dehydrogenase must be within normal ranges and no high-risk genetic abnormalities must be present. These values suggest a relatively favorable prognosis.

2. Stage II: This stage includes patients who do not fall into Stage I or Stage III based on their β2M, albumin, DHL levels, and genetic features. It's an intermediate stage.

3. Stage III: In Stage III, the beta-2 microglobulin (β2M) level is above 5.5 g/dl, and must meet one of the following: presence of one or more of the high-risk genetic abnormalities: t(4;14), t(14;16), and del(17p); or elevated serum lactate dehydrogenase (DHL) level. 

These values indicate a more aggressive disease and may guide treatment toward a more aggressive regimen, but it does not completely determine overall survival. That is, there can be patients with high-risk disease who respond very well to treatment with better survival and there can be patients categorized as Stage I who don’t do as well as expected.  

It's important to note that the R-ISS staging system is based solely on laboratory values and does not take into account other factors that could influence prognosis, such as genetic and molecular characteristics of the cancer cells. Additionally, the R-ISS system does not include imaging or clinical features that are commonly used in staging other types of cancers.

Overall, the R-ISS staging system provides a general idea of the disease's aggressiveness and prognosis, but multiple myeloma is a complex disease, and individual patient outcomes can vary widely based on a combination of factors beyond just the R-ISS stage. Medical professionals use staging information along with other clinical and laboratory data to create a comprehensive picture of the disease and develop an appropriate treatment plan.

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Myeloma Prognosis Resources 

• Three to Five Years: Not a Looming Sentence Article 
• How Long Will I Live with Myeloma and Is There A Cure?
• Revised Staging System: Myeloma Article
• Assessing the State of Myeloma Round Table (2021)