Coping With a Multiple Myeloma Diagnosis
- Paul Angliss’s persistent back pain turned out to be a warning sign of multiple myeloma, a rare blood cancer that had silently weakened his bones and led to a broken neck and near-paralysis.
- Following chemotherapy and a stem cell transplant, Angliss reached remission and now urges others: “If you’re getting bad back pain and you can’t put it down to pulling or twisting it, go and see your doctor.”
“We have two types of normal bone cells, bone cells that make new bones and bone cells that chew up old bones,” explained Dr. Sarah Holstein of the University of Nebraska Medical Center. - “In the presence of the myeloma cells…the bone-chewing cells become much more active,” she said, leading to holes that weaken the bones. Tests revealed Angliss had 28 holes in his bones.
- The standard treatment approach for multiple myeloma goes from the induction phase, the stem-cell transplant phase, and then the maintenance phase. Since multiple myeloma patients face a higher chance of relapse (the cancer coming back), maintenance treatment is important because it can extend periods of remission.
- The chemotherapy drug Revlimid (generic name lenalidomide) is a type of maintenance treatment that has been shown to improve survival for patients living with multiple myeloma, including journalist Tom Brokaw. Other treatments also exist for relapsed patients.
“They told me they think I could have myeloma because it’s really unusual for someone to stub their toe and break their neck – that was a real bomb,” Angliss recalled to the news outlet The Sun.
Read More“Normally, these two types of cells should work in unison and make sure that the bone strength is normal. In the presence of the myeloma cells, however, the bone-chewing cells become much more active, which causes these holes in the bones to form. These holes weaken the bones,” Dr. Holstein continued.
“Myeloma weakens your bones – you wouldn’t know you have it unless you do something like break a bone,” Angliss said.
Angliss had been pushing through the pain for months. Last summer, he even climbed Mount Fuji, one of Japan’s tallest peaks, despite the discomfort. But the pain only intensified. Heat packs became his daily crutch — until a seemingly minor household accident changed everything.
“I hit my toe against a chair and this shockwave went up my spine,” he said. “I was paralyzed, I had spasms in both sides of my neck.”
The severity of his symptoms sent him to the doctor, where a battery of tests revealed the truth: multiple myeloma had riddled his spine with holes — 28 of them. “I was lucky that myeloma was found early on,” he said.
His treatment began immediately. Four months of weekly chemotherapy were followed by an autologous stem cell transplant — a procedure that uses the patient’s own cells after high-dose chemo.
WATCH: What is a Stem Cell Transplant For Multiple Myeloma?
“It allows us an opportunity to give you a very high dose of chemotherapy, so that we can really get out that hard-to-reach myeloma,” explained Dr. Nina Shah, a hematologist at UCSF.
By October, Angliss was in remission. But the experience left him with a message he hopes others will hear.
“If you’re getting bad back pain and you can’t put it down to pulling or twisting it, I would go and see your GP,” he urged.
Expert Resources on Multiple Myeloma
- A Great New Option For Multiple Myeloma Patients: Daratumumab Now Available As a Quick Shot, Replacing Long Infusions
- Adding Daratumumab to Front-line Therapy in Multiple Myeloma
- Adding Sarclisa to Treatment– A Promising New Option for Relapsed Multiple Myeloma
- Advocating for Yourself is the Most Important Thing: Multiple Myeloma Survivor Ann Bogle's Story
Understanding Multiple Myeloma
Multiple myeloma is a rare and incurable type of blood cancer. When you have this cancer, white blood cells called plasma cells (the cells that make antibodies to fight infections) in your bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for your body’s healthy blood cells to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys.
“In general, having blood cancer means that your bone marrow is not functioning correctly,” Dr. Shah explained to SurvivorNet.
Known risk factors for multiple myeloma include your age, family history of cancer, and whether you have monoclonal gammopathy of undetermined significance (MGUS). MGUS is a condition that occurs when you have too much monoclonal protein in your blood and bone marrow.
Most people diagnosed are in their 60s. However, people younger than 60 can also get this type of cancer, and if you have a close relative with multiple myeloma, that can increase your risk.
WATCH: Recognizing multiple myeloma symptoms.
Multiple myeloma can cause symptoms such as weakness, dizziness, bone pain, and confusion, among other symptoms.
Doctors use blood and urine tests and imaging tests such as X-rays or MRIs to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.
Treatment Options for Multiple Myeloma
Treatment for multiple myeloma depends on your risk level. Some patients are considered standard risk, while others are high-risk. Your risk depends on irregularities in the chromosomes of their cancer cells:
- Standard Risk – Extra copies of some chromosomes typically characterize this.
- High Risk – A missing part of chromosome number 17 typically characterizes this
These gene differences control the aggressiveness of the cancer cells. According to Dr. Kenneth Anderson, director of the Multiple Myeloma Center at Dana Farber Cancer Institute, standard risk has “a better prognosis.” In contrast, high-risk myeloma “confers a much poorer outcome.”
The standard treatment approach for multiple myeloma goes from the induction phase, the stem-cell transplant phase, and then the maintenance phase.
- Induction Phase: This phase is the same regardless of risk. It consists of triplet drug therapy, which includes an immunomodulatory drug (Revlimid or Pomalyst), a proteasome inhibitor (Kyprolis, Velcade, or Ninlaro), and a steroid (dexamethasone or prednisone).
- Stem-Cell Transplant Phase: This phase is the same regardless of risk. It consists of chemotherapy coupled with a stem-cell transplant.
- Maintenance Phase: This phase will differ based on the risk profile.
Maintenance treatment is essential because it keeps the cancer at bay. Since multiple myeloma patients face the risk of relapse even if the cancer is put into remission, maintenance treatment helps keep the cancer in remission for longer periods.
SurvivorNet has shared retired journalist Tom Brokaw’s cancer treatment journey, which includes the maintenance treatment Revlimid (generic name lenalidomide). This treatment is an oral medication that has helped treat patients living with multiple myeloma. Combined with other therapies, standard doses of lenalidomide kill off myeloma cells.
WATCH: Tom Brokaw explains his cancer journey and breakthrough treatment.
This drug activates immune cells that kill bacteria, viruses, and cancers. It also reduces vital blood flow to cancerous tumors, helping kill them. However, some patients don’t tolerate lenalidomide well because of some of its potential side effects, including nausea, vomiting, swelling of the limbs and skin, and liver problems.
When Multiple Myeloma Relapses, You Still Have Options
When your multiple myeloma comes back within about a year, your disease is generally classified as ‘high risk.’
When multiple myeloma returns after treatment, “It usually means that there were residual cells, even in very small numbers. They were either resistant to the treatment from the start, or they acquired resistance as the treatment was growing,” Dr. Anderson explains to SurvivorNet.
In other words, not every myeloma cell in your body is precisely the same. Some start with a set of mutations that can give them resistance to treatments and make them more likely to relapse, whereas others develop mutations as a result of treatment.
WATCH: What Is the Standard of Care for the First Relapse?
The Signs of a Multiple Myeloma Relapse
- Increased levels of monoclonal antibodies: myeloma cells are cancerous plasma cells in the bone marrow that overgrow and produce abnormal proteins. These abnormal proteins are released in the blood and can be detected by physicians. When the levels of these increase substantially, that can be a sign multiple myeloma has relapsed.
- Increase in plasma cells in the bone marrow: Oncologists can use magnetic imaging, like MRI or PET scans, to see if there is a greater than normal level of plasma cells in the bone marrow, which is typical of overly dividing myeloma cells.
- Bone fractures and lesions: Myeloma cells activate the cells that break down bones and deactivate the cells that build up bones, which can result in fractures or small holes in bones. Oncologists can use X-rays or CT scans to detect bone damage indicative of relapse.
When or if multiple myeloma returns, remember that many treatment options exist. Oncologists may turn to therapies approved only for clinical trials, namely CAR T-cell therapy.
WATCH: A Step-By-Step Guide to Having CAR T-Cell Therapy
“We’re using the CAR T-cells now literally in patients who have no other options,” explains Dr. Anderson. CAR T-cells are immune cells harvested from a patient’s body, genetically modified to target specific cells (like multiple myeloma), and then reinfused back into a patient.
Second-generation drugs, which are more recent adjustments and improvements to existing therapies, are an option to treat resistant forms of the disease.
For relapsed patients, the second-generation treatments include:
- Kyprolis (carfilzomib) – is a proteasome inhibitor.
- Pomalyst (pomalidomide) – 2nd generation immunomodulatory.
- Dexamethasone – a mainstay of myeloma treatment in both relapsed and initially diagnosed patients.
- Daratumumab, an immunotherapy, is also added to the mix. More specifically, Dara is a monoclonal antibody that ‘tags’ cancer cells for quick and efficient recognition by the immune system.
For more options following multiple myeloma relapse, clinical trials may offer a solution. SurvivorNet has extensive resources about how to access these options as well.
A U.S. Food and Drug Administration (FDA) advisory panel recently expressed support for previously approved CAR T-cell therapies Carvykti and Abemca to treat adults diagnosed with relapsed or refractory multiple myeloma sooner in their treatment journey. During clinical trials, the treatments saw a “59%” reduction in multiple myeloma disease progression in clinical trials for patients who received one prior line of treatment. During these same clinical trials, some patients experienced “early deaths”; however, experts reviewing the drugs felt the benefits outweighed the risks.
The FDA will further review Carvykti and Abecma’s supplemental Biologics License Applications (sBLA), which is a necessary step during the drug approval process. These treatments can be available to multiple myeloma patients earlier in their treatment journey if approved.
Questions for Your Doctor
If you are facing a multiple myeloma diagnosis, you may be interested in the treatment Tom Brokaw has had success with. Here are some questions to help you begin the conversation with your doctor:
- What stage is my multiple myeloma?
- What are my treatment options?
- Am I a good candidate for Revlimid?
- What are the possible side effects of your recommended treatment?
- Who will be part of my healthcare team, and what does each member do?
- Can you refer me to a social worker or psychologist who can help me cope with my diagnosis?
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