Understanding Multiple Myeloma
- Laura Sims-Thickett, 40, was described as a “hypochondriac” and repeatedly sent home from the hospital before learning she had multiple myeloma, a rare type of blood cancer.
- Now, her husband is speaking out about her delayed diagnosis, showing how people need to advocate for themselves when it comes to their health.
- Multiple myeloma involves plasma cells – a certain kind of mature white blood cell in the bone marrow that helps fight infection by producing proteins that help your immune system fend itself against germs.
- For people with multiple myeloma, cancerous plasma cells, or myelomas, grow uncontrollably in the bone marrow and crowd out healthy white blood cells. This, in turn, inhibits the immune system’s ability to fight off infection which leads to fatigue.
In late 2021, the 40-year-old mom, who also has cerebral palsy, was sent home twice from the Royal Stoke University Hospital emergency room in Stoke-on-Trent, England, after experiencing intensely painful back pain.
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He continued, “Those first 12 months hit her hard. She had never smoked, never taken drugs, and we don’t drink, and then to be told she’s got this life condition … We didn’t explain to our daughter what was going on, just that she was having treatment for her blood. It has taken its toll emotionally, physically and financially.”
Paul’s wife’s cancer batter comes as his job gave him a “notice of redundancy,” leaving him with no income—prompting him to create a GoFundMe to help with the “ever-rising cost of household bills” and their mortgage.
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He explains on the crowdfunding page, “To be a registered carer for my wife, they said they will give me £97 ($120) a week and need to look after her for more than 35 hours a week to get that. 35 hours a week… which is pretty much a full-time job, and means I won’t even be able to work part-time to earn more money to pay the bills or put food on the table.”
As Laura now is set to finish cycle two of her chemotherapy, her husband insists that “despite all this,” he continues to stay positive.
In response to the couple’s disapproval of the Midlands Partnership NHS Foundation Trust (MPFT), which offers community support, and the Royal Stoke hospital, Royal Stoke chief nurse Ann-Marie Riley said: “We will always aim to deliver the highest standards of care possible and apologize if they have not been met. We will investigate when patients and families raise concerns about the care provided in our hospitals, to resolve any issues and see if there are lessons to be learnt. We would encourage Mr. Sims-Thickett to speak to our patient advice and liaison team who can provide support.”
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“Although we cannot comment about individual patients without their permission, when a patient is admitted into the care of the community nursing team a full assessment of need is carried out together with the patient and their carer to determine appropriate treatment and care,” an MPFT spokesperson stated.
“Assessing the patient’s risk of developing pressure damage is the first step in pressure ulcer prevention. Once a level of risk has been identified, then the correct advice, plan of care, treatment, and equipment to suit individual needs can be provided with the agreement of the patient. Trust staff will work closely with the patient and their carer to minimize the risk of or exacerbation of skin breakdown. We are sorry Mr Sims-Thickett is not happy with the care provided to his wife and we are always happy to address any concerns about the care we provide via our patient advice and liaison service.”
What Is Multiple Myeloma?
Multiple myeloma is a rare 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.
Dr. Nina Shah, a hematologist at the University of California San Francisco previously explained to SurvivorNet, “In general having a blood cancer means that your bone marrow is not functioning correctly.”
Learning About Multiple Myeloma
Oftentimes, doctors locate multiple myeloma while conducting a blood test in search of another condition, or when trying to decipher the cause behind 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.
According to the American Cancer Society, doctors stage multiple myeloma diagnoses based on if the disease has metastasized (spread) in the body.
Multiple myeloma can be divided into categories that help physicians determine which treatments and approaches are best to use. “We tend to [divide them] based on how risky the myeloma is, whereas other cancers will be staged based on how far the cancer has spread,” Dr. Shah explained.
The three categories of multiple myeloma are:
- High-risk multiple myeloma exists when a patient’s cells contain missing segments of DNA or switched segments.
- Intermediate-risk multiple myeloma is when some of these DNA changes are not present but a patient has elevated levels of certain proteins in the blood.
- Low-risk multiple myeloma exists when a patient has none of these changes.
Multiple Myeloma Symptoms and Risk Factors
Certain factors can increase your chances of developing multiple myeloma. However, it’s important to remember that this is a rare cancer, and just because you have any of these factors doesn’t mean you will get this cancer.
Multiple myeloma risk factors include:
- Age. Most people with this cancer are diagnosed in their 60s, although it is possible to get multiple myeloma earlier in life.
- Family history. Having a sibling, parent, or another close relative with this cancer could increase your risk.
- Gender. Men are at slightly higher risk for this cancer than women.
- Race. African Americans tend to have higher rates of this disease, although it is still relatively rare. Asian Americans are the least likely to get this cancer.
- Monoclonal gammopathy of undetermined significance (MGUS). This condition with the hard-to-pronounce name simply means that you have too much of an abnormal protein–called monoclonal protein–in your bone marrow and blood. MGUS is rare, and the risk that it will turn into multiple myeloma is only 1% each year.
Multiple myeloma symptoms can range from tiredness to nausea, and constipation. Other symptoms may include:
- 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
Remember that these symptoms could be signs of other conditions. If you’re noticing any of these symptoms or are worried about any changes to your body, you reach out to your doctor.
Treating Multiple Myeloma
SurvivorNet doctors say treatment options for multiple myeloma include:
- Targeted Therapy. Targeted therapy agents may 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.
- 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.
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Advice for Multiple Myeloma Patients
Multiple Myeloma survivor Ann Bogle previously spoke with SurvivorNet about the importance of advocating for yourself as a patient.
Following her battle with the disease, Bogle’s has shared some words of wisdom with other multiple myeloma patients:
“My first (piece of) advice would be your own advocate, ask for your copies of your medical records because they belong to you.”
“Second would be to find a myeloma specialist because … not everybody is a myeloma specialist.” Bogle says she is part of a multiple myeloma support group; the members try to help new members find myeloma specialists.
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“Please search one out and, you know, some doctors are more willing to accept that than others,” she added. “For instance, I know at least the myeloma doctors at Mayo really bend over backward to work with community hematologists.”
Her third and final piece of advice is to find a support group, whether it be her myeloma support group, one like it, or even a family member or a friend, because a support system is so important when going through a cancer battle.
Contributing: SurvivorNet Staff
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