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'I Thought I Had A Bad Back For Months - Incurable Disease Left Me With Holes In My Skull'
This article contains affiliate links, we will receive a commission on any sales we generate from it. Learn more Myeloma Awareness Week campaign highlights diseaseA mum whose incurable cancer had been missed for nearly a year was left with a broken back and shoulders, as well as holes in her skull, legs and arm by the time she was diagnosed. Mia Savage, from Carmarthen in Wales, discovered she had myeloma after more than 10 months of excruciating back and rib pain.
The 47-year-old first knew something was wrong when she started to feel extremely worn out and in pain.
"Something felt wrong," said Mia, who is a single parent and full-time carer.
"I just didn't feel like myself. I felt like I had done 10 rounds with the Incredible Hulk but had no reason for it. I had pain in my hips and ribs.
"Imagine running up the highest hill you know and never recovering from it. All I wanted to do was sleep and still do. It wasn't normal for me.
Mia Savage, 47, was diagnosed with myeloma after suffering extreme pain (Image: Myeloma UK)"I woke up and half an hour later, I felt it was time for bed again. I had reduced sensation in my legs, a bit like walking around on memory foam, and tingling toes like when pins and needles start going away."
Mia's doctor thought she had just pulled her back and prescribed painkillers. Catching Covid in June 2023 further "muddied the waters" when it came to getting a diagnosis.
Mia said: "I kept testing positive over and over. I went to A&E because I was in pain, had the tiredness, everything, and was diagnosed with long Covid. Little did they know it was the myeloma making it harder for the Covid to disappear."
Mia kept losing weight. She had back-and-forth appointments to the GP, but saw a different doctor every time and was prescribed increasingly stronger painkillers.
Mia Savage with her daughter (Image: Myeloma UK)But things took a turn for the worse in November 2023 when Mia felt a "ping" in her lower spine, walking down her mother's garden. This was actually caused by a vertebra in her back snapping.
"It just happened, no rhyme or reason, just ping – as if someone was flicking me with their finger – and, boy, after that was the pain bad," she said. "I couldn't stand without pain, couldn't sit or lay down. Going from being almost fine to suddenly immobile is awful."
She went back to A&E and was sent home with Valium. Further similar pain prompted her to go back to A&E were tests were carried out, revealing the truth - that she had myeloma.
Scans showed a small mass was pushing against her spinal cord.
Mia undergoing treatment in hospital. She is keen to raise awareness of the disease to help others (Image: Myeloma UK)The cancer has started weakening her bones and she had two broken shoulders, a broken vertebra as well as holes in her skull, legs and arms.
"When they told me, it was a relief," she said. "I was glad to know. I'm very much a realist and I don't believe in burying your head in the sand.
"But I did have a few moments when I thought, 'I can't handle this right now'. Myeloma has affected us as a family as a whole."
Myeloma is a type of cancer that develops from blood cells in the bone marrow. This can cause symptoms such as bone pain, fractures, fatigue and frequent infections.
According to Cancer Research UK, around 6,000 people are diagnosed with myeloma in the UK each year, and it accounts for around 3,100 deaths annually.
Mia signed up to a clinical trial in January and is now awaiting a stem cell transplant.
"I don't want to be overly optimistic because the next stage will be hard," she said. "But I'm hoping that part of me is stronger and manages to cope with the symptoms. I just push myself through and the trial is going to give me a better chance. I'm doing it for my daughter."
Mia is now backing charity Myeloma UK's #InMyeOwnWords campaign to spread the word about myeloma and its tell-tale symptoms before it's too late.
By sharing her story, she hopes to empower the public to spot the signs and speak to their GP as soon as possible if something doesn't feel right.
Mia added: "It was obvious that something needed to be fixed even though I didn't know what it was. My advice to anyone in the same position would be to go back. You know your body. If your doctor tells you it's a pulled muscle and it's not getting better, follow up, go back."
The main signs and symptoms of myeloma are:
If you experience symptoms you should speak to your GP.
Multiple Myeloma
Multiple myeloma is a type of blood cancer that forms in the plasma cells, or white blood cells in the bone marrow. Plasma cells normally produce antibodies, which are blood proteins the immune system uses to fight off harmful bacteria and viruses. The plasma cells in people with multiple myeloma grow out of control and limit the growth of healthy cells. If untreated, cancer cells can damage the kidneys, bones, and immune system, and cause anemia.
Many people with multiple myeloma may not notice symptoms. Multiple myeloma typically goes unnoticed until a healthcare provider discovers it during a routine blood test. People with the condition may sometimes have bone pain and fatigue.
A diagnosis of multiple myeloma can be scary and unsettling. An early diagnosis helps you get treatment in the early stages, reduce symptoms, slow disease progression, and prolong survival. The five-year relative survival rate is nearly 60%.
Multiple myeloma is rare, representing less than 2% of all cancer diagnoses in the United States. About 159,800 people have the condition. Read on to learn about multiple myeloma symptoms, stages, treatments, and more.
Each type of multiple myeloma differs depending on what form of abnormal antibodies they produce. A healthcare provider may classify multiple myeloma into one of several types: typical, Bence Jones, non-secretory, or immunoglobulin gamma (IgM). Typical Myeloma Typical myeloma is the most common form of multiple myeloma. People with typical myeloma may have plasma cells that produce one of the following antibodies: IgA kappa or epsilon IgD IgE IgG kappa or epsilon IgM Bence Jones Myeloma Bence Jones myeloma, also referred to as light chain myeloma, affects 15% to 20% of people with multiple myeloma. People with Bence Jones myeloma have cancerous plasma cells that produce proteins called kappa or epsilon. Kappa and epsilon proteins may damage the kidneys and nerve cells. Non-Secretory Myeloma People with non-secretory myeloma may produce little or no abnormal antibodies. Non-secretory myeloma is rare and generally only affects 1% to 5% of people with multiple myeloma. Immunoglobulin Mu (IgM) Myeloma People with IgM myeloma, also called Waldenström's disease, produce too many IgM antibodies. This type of myeloma is rare, affecting less than 1% of people with multiple myeloma. The development and treatment of IgM myeloma are different from other types of multiple myeloma. IgM myeloma may cause damage to your lymph nodes, so the disease is classified as a plasmacytic lymphoma. Getty Images / Jo Imperio The majority of people may not notice symptoms before receiving a diagnosis. You may begin to have multiple myeloma symptoms as the disease progresses, such as: Bone loss and fractures: Bone loss may happen if cancerous cells spread to the bone. If they metastasize (spread), cancer cells can form tumors and lytic lesions (a type of bone destruction) in the bones. Bone loss and destruction can increase fracture risk. Bone pain: This type of pain mainly occurs during an advanced stage of cancer. You may feel bone pain in your chest, arms, and legs. Moving your body too much can worsen bone pain. Bruising: If cancer cells build up underneath the skin, you may start to notice bruise-like bumps on your body. Frequent infections: Plasma cells are essential for proper immune system function. Multiple myeloma may weaken the immune system when plasma cells become cancerous. A weak immune system makes it hard for the body to fight off infections, making you more vulnerable to bacteria and viruses. Neurological damage: Multiple myeloma may cause fractures in the spine, which can damage nerve cells. Damaged nerve cells can result in neurological symptoms like numbness, tingling, pain, or muscle weakness. Loss of bowel or bladder control may also occur. Multiple myeloma affects the plasma cells, a type of white blood cell. These cells aid in the body's immune response. Bone marrow, or the soft tissue inside many bones, creates white blood cells. Abnormalities in the plasma cells grow out of control and can form tumors in people with multiple myeloma. The exact cause of multiple myeloma is unknown, but experts believe that genetic changes play a role. People with the condition often have somatic mutations that affect genes that control cell division. Somatic mutations are genetic changes that aren't passed down from generation to generation. These changes instead develop over the course of a person's life. Risk Factors Some evidence suggests factors that can increase the likelihood of multiple myeloma include: A family history of the condition Being older than 65 Exposure to radiation or harmful chemicals, such as herbicides or insecticides Infections Other conditions that also affect the plasma cells A healthcare provider or oncologist (who specializes in cancer) can diagnose multiple myeloma. They'll likely ask questions about your health history and symptoms. The "CRAB" criteria may indicate multiple myeloma. CRAB is an acronym for: Calcium (higher than usual in the blood) Renal (liver) failure Anemia Bone disease Not everyone with multiple myeloma has all of these issues at the time of diagnosis. Routine blood tests are one of the first signs the body is producing abnormal antibodies. A healthcare provider may further analyze blood samples or order additional tests if they suspect multiple myeloma. Other diagnostic tests can include: Biopsy: A healthcare provider can take a sample of skin tissue to confirm multiple myeloma. Bone aspiration: This test involves removing a sample of bone marrow. Imaging tests: A healthcare provider may use imaging tests like an X-ray, MRI, or CT scan to determine if the cancer has spread and where. Bone loss may also be noticeable on X-rays. Urine tests: Abnormal proteins can also show up in a urine sample. Stages of Multiple Myeloma A healthcare provider will evaluate your blood tests, imaging tests, or bone or skin tissue to stage multiple myeloma. Stages include: Stage 1: This is also known as monoclonal gammopathy of undetermined significance (MGUS). Blood tests may show less than 3 grams (g) of abnormal antibodies per deciliter (dl) of blood. People with MGUS don't typically have symptoms. You may not meet the "CRAB" criteria or have any damage to your organs. Stage 2: This is also known as smoldering myeloma. Blood tests yield more than 3 g of abnormal antibodies per dl of blood. People with smoldering myeloma may not have symptoms or meet the "CRAB" criteria. About 50% of people in this stage will develop multiple myeloma within five years. Stage 3: This happens when smoldering myeloma progresses into multiple myeloma. People in stage 3 will have more than 3 g of abnormal antibodies per dl of blood. You may meet one or more of the "CRAB" criteria and have organ or tissue damage. There is no cure for multiple myeloma. Treatments can slow disease progression, manage symptoms, and improve the quality of life. Multiple myeloma typically progresses slowly. You might not need treatment right away if you are in stage 1 or stage 2. A healthcare provider may monitor disease progression closely by setting up check-ins and blood tests every three months. People in stage 3 may require immediate treatment. Many different treatment options are available. A healthcare provider, oncologist, and any other specialist on your care team will conduct tests to determine the type of multiple myeloma you have. A combination of treatments can be helpful in targeting multiple myeloma and reducing symptoms: CAR-T therapy: This is a type of immunotherapy. CAR-T therapy uses genetically-modified cells to target and attack cancer cells. Chemotherapy: This drug treatment aims to kill fast-growing cancer cells. Chemotherapy may control or stop the progression of multiple myeloma in some people. Corticosteroids: Some corticosteroids, like prednisone, can be combined with chemotherapy treatment to improve symptoms. These are generally available in pill form. Immunomodulators: These medicines help the immune system target and destroy cancer cells. Monoclonal antibodies: These proteins target antigens on cancer cells. Antigens are substances that help produce abnormal antibodies. Nuclear export inhibitor: The nuclear export transfers proteins out of the nucleus in cells. The nucleus of a cell contains the genetic material that produces harmful proteins. Inhibitors can prevent protein build-up and kill cancer cells. Proteasome inhibitors: People with multiple myeloma have an abnormal amount of antibodies. Proteasome breaks down these antibodies in the cells and causes them to spread. Using a proteasome inhibitor can prevent the spread of cancer cells. Stem cell transplantation: A healthcare provider may use your or a donor's bone marrow stem cells for a transplant. Transplants do not cure multiple myeloma but can slow disease progression. There are no known therapies that can stop MGUS or smoldering myeloma from progressing into multiple myeloma. Research has found preliminary evidence that preventing infections can slow the progression of multiple myeloma. Infections are currently one of the primary risk factors for developing the condition. The following actions can prevent infections: Being vaccinated against common bacteria and viruses Receiving antimicrobial prophylaxis, which helps prevent infections before surgeries Replacing antibodies in people who are at risk of developing the disease Taking infection control measures (e.G., hand hygiene, using personal protective equipment, and disinfecting shared surfaces) Multiple myeloma can increase the risk of different conditions. The reason why people with multiple myeloma can develop other conditions is because the cancer cells affect the blood and several organs. Some of the most common related conditions include: Anemia: Fatigue often occurs due to anemia, or when the body doesn't have or make enough red blood cells to carry oxygen throughout the body. Hypercalcemia: The bones can release an excess amount of calcium into the blood if they break down. High blood calcium levels, or hypercalcemia, may cause symptoms like nausea and vomiting, frequent urination, and excessive thirst. Hyperviscosity syndrome: This condition causes the blood to thicken and makes it difficult for blood to move freely in and around the blood vessels. Hyperviscosity syndrome happens when there are too many proteins in the blood. Symptoms may include bleeding in the nose and mouth and heart failure. Kidney damage: Kidney damage or failure is one of the first noticeable complications of multiple myeloma. An abnormal amount of proteins and calcium in the blood may cause damage to the kidneys. Living with multiple myeloma can be difficult. You may feel sad, frustrated, or hopeless when you receive a diagnosis. These feelings are normal. It can be hard to live with symptoms and go in for treatment. A team of healthcare providers can help make your condition feel more manageable. Some evidence suggests that partaking in regular light exercise, eating a nutritious diet, and getting enough sleep can ease symptoms. You may also find it helpful to seek out support from your family, friends, and other people with multiple myeloma to make your condition feel less overwhelming. You may consider asking a healthcare provider for a referral to a mental health specialist if you feel like your diagnosis is weighing on your emotional well-being.Thanks for your feedback!
Understanding Your Outlook And Treatment With Stage 3 Multiple Myeloma
Multiple myeloma is a rare type of cancer that develops in plasma cells. Plasma cells are a type of white blood cell in the body. In a healthy body, plasma cells are responsible for recognizing and fighting off invading germs and infections.
In people with a diagnosis of multiple myeloma, cancerous plasma cells grow out of control and eventually overtake the healthy plasma cells. This process depletes your body of much-needed white blood cells. As the ratio of cancerous cells to healthy cells grows, so do symptoms of the cancer.
Your doctor will run several tests to give you a diagnosis and a cancer stage. These tests look for and detect several different signs of the disease that can't be seen with the eye. Test results will reveal the following if you have advanced-stage multiple myeloma:
When you receive a diagnosis of multiple myeloma, your doctor will want to determine how advanced the cancer is. Multiple myeloma is classified as stage 1, 2, or 3. Stage 3 is the most advanced stage of this type of rare cancer.
Doctors use the international staging system to determine the stage of the cancer. This system is based on whether there are any gene abnormalities (cytogenetics) and the levels of blood beta-2 microglobulin, albumin, and serum lactate dehydrogenase (LDH).
The prevalence of a particular symptom depends on what it is and ranges from 12.9% to 71.8%.
These can include:
There are two forms of multiple myeloma: smoldering and active.
When a doctor diagnoses smoldering multiple myeloma, often you do not display any symptoms. Your doctor will also not likely take any steps to treat it. Instead, they will watch and wait, meaning you will need to get regular monitoring to check for disease progression.
Smoldering multiple myeloma occurs in about 0.53% of people over age 40 years and is a bit more common in men than in women.
On the other hand, active multiple myeloma refers to a cancer that's growing, spreading, and causing symptoms. As the cancer grows and spreads, you may notice increasing symptoms and complications. Stage 3 is an active stage of this cancer.
What are the final stages of multiple myeloma?As multiple myeloma progresses to end stage, the symptoms you're likely to experience are known as CRAB, which stands for:
This can lead to an increasing number of infections, easily broken bones, pain in joints, back, hands, and feet, and a lack of energy and fatigue.
Often, your treatment team will work with you to address your symptoms, which can help improve your quality of life.
Early stages of the cancer may not need immediate treatment. Doctors may opt for watchful waiting when symptoms do not appear and the disease is progressing slowly.
Treatment for stage 3 multiple myeloma aims to reduce symptom severity and slow its growth and progression. A person's treatment will vary based on several factors, including:
Common treatments for multiple myeloma include:
In multiple myeloma cases, stage 3 is the terminal stage. It can also be referred to as the distant stage, which means the cancer has spread beyond its initial location.
Even with treatment, the 5-year relative survival rate for distant multiple myeloma is about 57%. This means that people who have that cancer are, on average, about 57% as likely to live for at least 5 years after their diagnosis as people who don't have that cancer.
Can you live 10 years with multiple myeloma?Cancer survival data primarily focuses on 5-year survival rates, so there is little data on survival beyond that time frame.
That said, research does indicate that with treatment, it may be possible to survive for 10 years after diagnosis, particularly for those who are younger.
Factors that can affect your outlookThe median survival rate is not absolute. Several factors affect your survival rate, including:
Though a cure for multiple myeloma currently doesn't exist, treatments can slow the progression of stage 3 multiple myeloma and improve symptoms. Meanwhile, research is making progressive leaps toward a treatment that eliminates the cancer entirely.
Future and current studies plan to focus on finding safer and more effective targeted therapies to help improve quality of life and life expectancy.
Following diagnosis, you should talk with your doctor about your outlook based on your unique situation.
If you receive a diagnosis of stage 3 multiple myeloma, you can take steps to cope with the cancer beyond medical treatments. Certain behavioral changes are an option that can help improve your overall health and reduce the severity of the cancer.
Some behavioral-based changes that may make a difference for you include:
Beyond these behavioral changes, other methods of coping can focus on getting psychological help to deal with any challenges that may come with a multiple myeloma diagnosis. Some useful coping techniques based on psychological help include:
Once your doctor diagnoses multiple myeloma, you'll likely receive care from a team of doctors, including an oncologist. An oncologist is a type of doctor who specializes in treating cancer. They help you navigate through the oncoming amount of information, numbers, possibilities, and realities.
Together with your healthcare team, you can find a treatment plan that maintains an aggressive approach to treating the cancer while maintaining a sense of control for you.
It's important to be able to influence your treatment decisions. Talk with an oncologist who can help you find that path.
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