Raising Awareness on Multiple Myeloma
- Simon Cummings, at 49 years old, was close to becoming paralyzed from his neck suddenly snapping — and after being rushed to the hospital, he eventually learned he had a rare, incurable blood cancer called myeloma, which is also known as multiple myeloma.
- Multiple myeloma is a rare type of blood cancer that hinders the body’s ability to fight infections. It can cause weakness, dizziness, bone pain, and confusion, among other symptoms. Advancements in multiple myeloma treatments have improved the lives of patients battling the disease.
- It’s important to note that although this type of disease is manageable thanks to treatment advances, multiple myeloma patients face a higher chance of relapse (the cancer coming back), and maintenance treatment is often an important part of one’s cancer journey because it can extend periods of remission.
- What’s also encouraging is that there continues to be new treatment options and therapies, which can include immunotherapies such as CAR-T cells and a growing number of drug combinations. There are a significant number of clinical trials being conducted for multiple myeloma and SurvivorNet has resources about how to access these options.
Simon Cummings, at 49 years old, was close to becoming paralyzed from his neck suddenly snapping — and after being rushed to the hospital, he eventually learned he had a rare, incurable blood cancer called myeloma, which is also known as
multiple myeloma because it can affect multiple areas of your body. The dad of two, now 53, in an interview given to Jam Press picked up by
The Sun on Sunday
, said he had jerked his neck back while chopping wood when a chip flew back at him. "[I] heard a crack and didn't think too much of it — until I was crying on the floor in agony a few hours later."
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Head of Hematology at Johnson & Johnson Talks to SurvivorNet About Getting Multiple Myeloma Patients Access to Good Information & Care "Had I not gone to the hospital when I did, I would've at the very least been completely paralyzed," Cummings added of the 2020 incident, noting that a scan of his necked showed that he missed paralysis by about 2 mm. One month later is when he learned of his myeloma disease. "I started to worry about not being able to provide for my family, spending time with Lisa, playing with our son and our plans to have a sibling for him."
After going through
chemotherapy treatment and a stem cell transplant , Cummings, who is from Bristol in South West England, went into remission in April 2021, but unfortunately the cancer returned this past May. Now undergoing chemotherapy again, incredibly, he has achieved remission status for the second time. Cummings is sharing his story to bring more awareness to this disease.
Stem cell transplants for multiple myeloma: Who is Eligible and what if your cancer center doesn't offer them? What are the Symptoms of Multiple Myeloma?
As noted with Cummings' story, multiple myeloma can be tricky to diagnose. Many of its symptoms, like tiredness, nausea, and constipation, can be signs of any number of conditions–from the flu to a stomach bug. Make an appointment with your doctor if any of the symptoms mentioned above or below don't seem to be improving:
- Weakness, dizziness, and shortness of breath, which are signs of a low red blood cell count, called anemia
- Bone pain, which could be a sign of a fracture
- Urinating too much or too little, muscle cramps, nausea and vomiting, which are symptoms of kidney failure
- Confusion, which is caused by too much calcium in the blood
- Frequent infections, because you have too few white blood cells to fight them
Could my symptoms be multiple myeloma? Treatment Options For Multiple Myeloma
Not everyone with multiple myeloma needs treatment right away. If you have smoldering multiple myeloma, your doctor might simply monitor you regularly, to see if your disease progresses. If you develop symptoms or your doctor thinks you need treatment, there are many options. Which of these treatments you receive, and how they are sequenced, depend on several factors, and on whether your treatment team thinks you are a good candidate for a bone marrow transplant.
Bone Marrow (Stem Cell) Transplant
This is also known as a stem cell transplant. It is a procedure to replace diseased bone marrow with healthy bone marrow without myeloma cells. Based on multiple factors, your doctor may decide that a stem cell transplant is best for you. The transplant process can be involved and requires multiple steps. Be sure to discuss this with your treating team to understand what is involved and what options are available. If you’re not a good candidate for chemotherapy, your treatment options include targeted therapies, biologics, and steroids.
Targeted Therapy
Targeted therapy is now available for patients with multiple myeloma, and targets abnormalities in myeloma cells that allow the cancer to survive. Examples of targeted agents your doctor may use include bortezomib (Velcade), carfilzomib (Kyprolis), and ixazomib (Sarclisa). These drugs are either given in a pill or through an IV, and cause myeloma cells to die by preventing the breakdown of certain proteins in myeloma cells. You doctor may also use other targeted agents in the class of medications known as monoclonal antibodies.
Biologic Therapy
Biologic therapy is another class of medication your treatment team may use to treat your myeloma. These medications use your bodys immune system to help fight and kill myeloma cells. This class of medication is most often given in pill form and include medications such as thalidomide (Thalidomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst).
Chemotherapy
Sometimes your treatment team may recommend chemotherapy to treat your myeloma. Chemotherapy uses strong medicine to target cancer cells throughout your body. If your doctor recommends a bone marrow transplant high doses of chemotherapy are used for this purpose.
Steroids
Occasionally, doctors may use corticosteroids such as dexamethasone or prednisone as part of your treatment. Steroids are different from chemotherapy, targeted therapy, and biologic therapy. They work to reduce inflammation throughout your body. Steroids are given as a pill, and are also active against myeloma cells.
Radiation
Radiation uses high-dose X-rays to stop cancer cells from dividing. It is sometimes used to target myeloma in specific areas that may be causing you issues or pain. It is also used if there are tumors or deposits of myeloma cells that need to be treated, such as a plasmacytoma — a tumor made of abnormal plasma cells — of the bone. Sometimes the cancer can return, or relapse after treatment. If this happens, your doctor can put you on one of the treatments you’ve already tried again, try a new treatment, or recommend that you enroll in a clinical trial. Any of these treatments can cause side effects, which may include nerve pain and fatigue. Your doctor can adjust your medication if you do have side effects. In general, you should start to feel better once your treatment starts to work.
Multiple Myeloma Relapse
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. Kenneth Anderson, Director of Dana Farber Cancer Institute’s Multiple Myeloma Center, explained in a previous interview with SurvivorNet.
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Groundbreaking CAR T-Cell Therapy Approved For Earlier Use in Relapsed Myeloma Patients, Good News For So Many Patients Seeking More Effective Treatments Sooner 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.
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 that 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 are a greater than normal level of plasma cells in the bone marrow, 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.
Coping with a myeloma relapse What’s the Effectiveness of CAR T-cell Therapy?
Your immune system comes equipped with an army of white blood cells, called T cells, that normally protect it from infections and cancer. But sometimes, these cells miss their target. “The cells that help fight cancer unfortunately don’t recognize their own cancer anymore,”
Dr. Julie Vose , chief of hematology/oncology at the University of Nebraska Medical Center, previously told SurvivorNet. CAR T-cell therapy “helps to wake up those cells to be able to fight cancer.” The entire process involved in getting CAR T-cell therapy can take a few weeks. It starts by drawing your blood and separating out the T cells. Then, using a virus modified to be harmless, the T cells are genetically engineered to produce proteins called chimeric antigen receptors (CARs) on their surface. These receptors will enable the cells to recognize and attach to a matching protein, called an antigen, on the tumor cell just as a key fits into a lock. The process primes the T cell to “recognize the cancer and to fight it,” Dr. Vose said.
WATCH: Why CAR T-Cell Therapy is an Exciting Treatment to Explore. Next, the modified cells are multiplied into the millions in a laboratory. You’ll need a lot of them to fight your cancer. The CAR T cells are specific to your cancer. For example, some types of lymphoma cells have the antigen CD19 on their surface. CAR T-cell therapies for those cancer types only target the CD19 antigen. A few days before the infusion, you’ll get chemotherapy to clear out some of your immune cells and prime your body to receive the CAR T cells. This will help the CAR T cells work better. Finally, the modified T cells will be infused back into your body to hunt down the cancer.
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The Revolution in Multiple Myeloma Treatment CAR T-cell therapy has shown a response rate as high as roughly 80 percent in some blood cancers after other treatments have failed. In lymphoma, more than 54% of people who took the FDA-approved CAR T-cell therapy axicabtagene ciloleucel (Yescarta) and 40% of those who took tisagenlecleucel (Kymriah) achieved a complete response, meaning they no longer had any sign of cancer in their body. With Yescarta, 40% of people were still in remission an average of 15 months after their treatment. Those who get CAR T-cell therapy have already been through at least two other treatments—usually rituximab (Rituxan) plus chemotherapy and high-dose chemotherapy. “Some of these patients had three, four, or five prior lines of therapy, and we were able to save their lives,”
Dr. Stephen Schuster , director of the Abramson Cancer Center’s lymphoma program, told SurvivorNet. For a full guide of resources, please check out SurvivorNet's multiple myeloma guide
HERE .
Contributing by SurvivorNet staff. 
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