Hope For Multiple Myeloma
- After dismissing worsening hip pain as aging, 59-year-old nurse Eva Podstata was diagnosed with multiple myeloma. After undergoing intensive treatments including stem cell transplants and CAR T-cell therapy, she is now remission and sharing hope with others.
- CAR T-cell therapy is FDA-approved to treat relapsed multiple myeloma. This treatment changes your own immune cells so they can find and treat your cancer.
- 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.
- There are a significant number of clinical trials being conducted for multiple myeloma and SurvivorNet has resources about how to access these options.
Thankfully, after two stem cell transplants and Car T-Cell Therapy, a one-time treatment that uses patient’s immune system’s T cells to attack cancer cells, Podstata is proudly in remission and sharing her story with Northside Hospital, offering hope to others living with the disease.
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Podstata, who lost her husband to cancer 10 years before her diagnosis, ultimately underwent a Positron Emission Tomography (PET) scan [a non-invasive nuclear medicine imaging test] and blood work for more insight into her cancer.
She explain how her doctor first put her on a drug called Lenalidomide (brand name: Revlimid) which lessened her pain and improved her blood work. Revlimid is an immunomodulatory drug. It works with your immune system to rid your body of cancer.
RELATED: What It’s Like to Take Revlimid for Multiple Myeloma
After she chose not to get radiation, she was taken off Revlimid and put on another drug called Velcade, before being referred to Northside Hospital’s Blood & Marrow Transplant Program.
RELATED: Treating Multiple Myeloma – Managing the Side Effects of Velcade
Podstata recounts her doctor telling her “although multiple myeloma is not curable, it is treatable,” and spoke about the advancements in treatment and stem cell transplants.
She ten decided to undergo a tandem stem cell transplant. The National Cancer Institute (NCI) describes this as “a type of transplant in which a patient receives two courses of high-dose chemotherapy, each course followed by an infusion of their own healthy blood-forming stem cells.”
“The stem cells are collected and stored before the first high-dose chemotherapy treatment,” the NCI explains further. “The treatments are given weeks or months apart but are usually completed within a 6-month period. A tandem transplant is used to treat certain types of cancer, such as neuroblastoma and multiple myeloma. Also called double autologous transplant.”
Podstata told Northside Hospital, “By God’s grace, I made it through both transplants. I experienced cytokine release syndrome, a storm that landed me in the ICU at Northside both times. Once again, God provided, surrounding me with the most compassionate, competent people. Although I didn’t know what each day would bring, I know who brings each day, and I know who I am.”
She ultimately found herself in remission, until two years later, in 2024, when followup scans revealed otherwise. That was when one of her doctors mentioned CAR T-cell therapy, an FDA-approved to treat relapsed multiple myeloma.
Podstata then chose to get a second opinion on CAR T-cell therapy, and moved forward with the new form of treatment as the medication she had been taking no longer helped her.
“The potential side effects were concerning. Having my cells removed and sent off for reprogramming didn’t sound good to me. But my options were limited,” Podstata said, noting how she was determined to “fight” for her family.
She underwent a CAR T-cell infusion on December 24, 2024, and has been back in remission since.
The Promise of CAR T-Cell Therapy in the Multiple Myeloma Treatment Paradigm
Podstata concluded, “I believe the hardest part of my journey was letting go and letting the experts do their jobs — to trust God and to trust those He placed in my life. Being too weak, I could do nothing but watch — how He provides and shows up — and hang on to hope.”
Dr. Nina Shah, Global Head of Multiple Myeloma Clinical Development and Strategy at AstraZeneca, previously told SurvivorNet, “When we think about how far we’ve come in multiple myeloma, we’re so excited about the potential power of CAR T-cell therapy. This is a one time treatment that we know can have very deep and durable responses for patients.
“If you ask any myeloma patient, he or she will tell you that they want to be off therapy and that’s what cellular therapy can really do. So we’re very excited to be a part of this.”
CAR T-cell therapy is a one-time treatment that is both a drug and procedure. A patient’s immune system’s T cells are extracted from their body, genetically modified in a lab to identify and attack cancer cells, and then put back into the body to do their work.
Expert Resources On Multiple Myeloma
- “An Important Step”: FDA Approves New Combination Treatment For Newly Diagnosed Multiple Myeloma Patients
- A Great New Option For Multiple Myeloma Patients: Daratumumab Now Available As a Quick Shot, Replacing Long Infusions
- Adding Sarclisa to Treatment– A Promising New Option for Relapsed Multiple Myeloma
- Antibody as Part of Initial Treatment For Multiple Myeloma?
- Are the Treatments the Same for a Second or Third Relapse of Multiple Myeloma?
- Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’
- CAR T-Cell Therapy: A Promising New Approach to Relapsed Multiple Myeloma
- Choosing the Best Treatment Path in the Relapsed/Refractory Multiple Myeloma Setting
- Clinical Trials for Multiple Myeloma: Why They Matter
- Comparing Immune Therapy Options For Multiple Myeloma: What Patients Should Know
“While CAR T is a really effective option for multiple myeloma patients, we know that less than 20% of eligible patients are actually getting CAR T-cell therapy, and that’s just in the U.S. Globally that might even be less,” Dr. Shah explains.
“So it’s really important for us as physicians, as drug developers to make sure we educate our physicians, our patients, and make them aware of this effective therapy because it really can change lives for patients.”
What is CAR T-Cell Therapy and How Does It Work?
For multiple myeloma, CAR T-cell therapy most commonly targets the “B-cell maturation antigen” [a protein found on the surface of cancerous plasma cells], also known as BCMA.
“One of the nice advantages is that, so far, CAR T is a one-and-done therapy,” Dr. Robert Orlowski, chairman, ad interim, and director of myeloma at MD Anderson Cancer Center, told SurvivorNet in a previous conversation.
“When the CAR Ts are reinfused, you don’t have any additional chemotherapy afterward … and many of these patients who were quite sick at the beginning feel better after this than after any prior therapy they’ve had.”
Plus, he says, “if people have a great response, [their quality of life] is much better, it seems, than with standard chemotherapies.”
The way the therapy works is by using the body’s immune system to destroy cancerous cells. The immune system’s main soldier in fighting off viruses and bacteria is the T-cell. Unfortunately, the body’s T-cells aren’t typically strong enough to fight off myeloma cells, but scientists have recently been able to extract T-cells from a patient’s body, modify them, and then reinsert them back into the patient.
The entire process involved in getting CAR T-cell therapy can take a few weeks.
- The first step is drawing blood and separating out the T cells.
- Then, using a virus that’s been 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.”
- Next, the modified cells are multiplied into the millions in a laboratory. Many are needed to fight cancer.
The CAR T cells are specific to the patient’s 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 actual infusion, the patient gets chemotherapy to clear out some of their own immune cells and prime their 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 the body to hunt down the cancer.
“One of the great things about cellular therapy that we’re learning is that it’s actually very effective in late lines of therapy and in more earlier lines. And not only that, it’s actually very well tolerated,” adds Dr. Shah.
“We know that cell therapy is a very effective therapy, but not necessarily all patients can get it. And that’s something that we really want to address, particularly with our FAST CAR-T manufacturing platform, which decreases the time of manufacturing and thereby will theoretically increase our capability to give more cell therapy products to more people,” explains Dr. Shah.
Currently, two BCMA-directed CAR-T cell therapies are FDA approved:
All About 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 the healthy blood cells your body needs to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys.
RELATED: When Multiple Myeloma Returns, SurvivorNet’s Resources
Sometimes, doctors find multiple myeloma while doing a blood test to look for another condition or when trying to find out what’s causing a patient’s unexplained 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.
RELATED: Hematologist and SurvivorNet advisor, Dr. Nina Shah, helps you understand this rare cancer
Multiple myeloma symptoms can range from tiredness, nausea, and constipation. Other symptoms may include:
- Weakness, dizziness, and shortness of breath, which are signs of a low red blood cell count, are called anemia.
- Bone pain, which could be a sign of a fracture.
- Urinating too much or too little, muscle cramps, nausea, and vomiting are symptoms of kidney failure.
- Confusion is caused by too much calcium in the blood.
- Frequent infections because you have too few white blood cells to fight them.
It’s important to know that these symptoms could be attributed to other conditions. If you experience any of these symptoms or are concerned about any changes to your body, you should address them promptly with your doctor.
Hematologist-oncologist Dr. Adam Cohen lays out your options during the maintenance phase of treatment
Meanwhile, multiple myeloma does cause bone conditions. According to the Multiple Myeloma Research Foundation, 85% of multiple myeloma patients have some kind of bone damage or loss.
“The most commonly affected areas are the spine, pelvis, and rib cage,” the Foundation explains.
The reason for this bone loss or damage is that multiple myeloma disrupts the bone remodeling process. The cancerous myeloma cells keep the cells in the bone responsible for removing old bone and rebuilding new bone from working properly.
The disease can also weaken the bone, resulting in fractures. And it can cause thinning of the bones, leading to osteoporosis [meaning the bones are more porous and more likely to fracture].
And “in advanced multiple myeloma, a patient may lose inches from his or her height due to compressed vertebrae over the course of their illness.”
So bone conditions can be a symptom of multiple myeloma.
RELATED: Why Do Some People With Cancer Experience Back or Bone Pain?
Getting a Diagnosis
Sometimes doctors find multiple myeloma while doing a blood test to look for another condition, or when trying to find out what’s causing a patient’s unexplained symptoms.
According to SurvivorNet’s experts, blood tests are also the way your doctor might learn that you have smoldering multiple myeloma or MGUS, because these conditions don’t usually cause symptoms. Smoldering multiple myeloma and MGUS aren’t cancer, but they can sometimes turn into cancer.
WATCH: Tom Brokaw explains his cancer journey and breakthrough treatment.
The odds that either condition will become cancer are very small, but to be safe, your doctor will probably check you more closely with blood and urine tests, and sometimes a bone marrow biopsy–removing and testing a small sample of the spongy material inside your bones. These tests can help monitor you for changes that signal you’ve switched over to multiple myeloma, and that you need to start treatment for this cancer. You may also need a bone marrow biopsy to help your doctor make the initial diagnosis.
Doctors use blood and urine tests and imaging tests, such as X-ray or MRI, to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.
Monitoring your bone strength and health over time will help your doctors understand how, or if, your disease is progressing.
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. Your 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 body’s immune system to help fight and kill myeloma cells. This class of medication is most often given in pill form and includes 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.
Extending Your Lifespan With Multiple Myeloma
Then you’ll ultimately reach the maintenance phase of treatment. Now that your doctor has gotten your cancer under control, from here the goal is to keep your disease stable and to maintain your quality of life. The type of maintenance therapy you get and what prognosis you can expect will depend on whether your doctor determines that your multiple myeloma is standard risk or high risk.
One of SurvivorNet’s experts describes the maintenance process for this disease as similar to lawn care. Once you care for your lawn and it’s no longer overgrown (that’s the initial treatment), it will need some tending, but with that attention (such as low doses of maintenance drugs), it can remain healthy.
Why the many phases of multiple myeloma are like caring for your lawn, says hematologic cancer specialist, Dr. Sid Ganguly
Sometimes this disease will return, even when you’re on maintenance therapies. You’ll still have treatments available if this happens.
Though it can be daunting to choose treatments for relapsed multiple myeloma, the medical experts at SurvivorNet are here to help you make sense of them. Remember that you do have options, and that the goal, which becomes more achievable with each new treatment that’s introduced, is to preserve your quality of life and extend your lifespan.
Questions to Ask Your Doctor
- Am I eligible for a CAR T-Cell Therapy?
- Where can I receive this treatment?
- How does my insurance handle the cost?
- What happens if the cells fail to grow in the lab?
- Are there clinical trials I could consider? Are there resources available to help with travel, lodging, and other costs?
- What are the risks vs. benefits of CAR T-Cell Therapy in my case?
Contributing: SurvivorNet Staff
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