Diagnosing Multiple Myeloma
- Jerry Cowhig, a British dad of two, was diagnosed with a rare type of blood cancer called multiple myeloma after experiencing chest and abdominal pain for a year. Now he’s urging others not to ignore symptoms that persist and push for answers—a stark reminder on the importance of taking action when it comes to your health this New Year.
- 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.
- According to SurvivorNet advisor Dr. Nina Shah a hematologist from UCSF, “Multiple myeloma can be hard to diagnose because sometimes the symptoms are ‘non specific.’ It’s common for someone to say ‘You know, I’ve been having this back pain and I’ve always had but somehow, it’s just not going away.’ You may go to your primary doctor with these complaints, and it’s not unreasonable for that doctor to watch and wait or to do a few X rays and maybe not find anything.”
- “At the first sign of anything abnormal in the blood or abnormal fracture, it’s important to say ‘okay, what am I missing? Is there something else maybe that could be causing this?’ And that’s often when we see a diagnosis of multiple myeloma,” says Dr. Shah. The key here is to keep pushing until you feel 100% comfortable that your symptoms have been explained and taken care of properly.
Now, Cowhig is sharing his story and working with the charity Myeloma UK to raise awareness on the importance of cancer screenings and fighting for answers. His cancer battle is a reminder to pay attention to symptoms and push for answers when it comes to your health this New Year.
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Cowhig’s symptoms, which consisted of extreme pain in his chest and abdomen, began back in 2013 and prompted him to get check by his general practitioner.
It wasn’t until after multiple checkups with his doctor that he was referred to gastroenterologist.
Finally, in 2014, scans showed a tumor impacting his spine, further explaining, “It had eaten away one vertebra completely. I’ve worked in science publishing all my life and have written countless pieces on medicine and so forth, but I didn’t know anything about myeloma or what it was.”
RELATED: The Most Shocking Cancer Misdiagnoses of the Year; Why Second (and Third) Opinions Matter
He recounted, as per BBC, that after the tumor was discovered, he was admitted into the hospital with a pulmonary embolism that arose from his cancer medicine, and he had shingles.
In an important reminder to others who may be suffering from unexplained symptoms, Cowhig said, “Everybody tells GPs they should be more aware of x, y, z, but you can’t expect them to be specialists in every disease.
“I’m not saying every GP should test every patient for myeloma, it’s completely unrealistic, but just to have it in their minds as a possibility. The floundering around for a diagnosis took a year out of my life and hit me with other problems.”
It’s important to note that although the disease which Cowhig has been diagnosed 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 incredible encouraging is that there continues to be new treatment options, and therapies considered novel a few years ago are very quickly gaining traction. These can include immunotherapies such as CAR-T cells and a growing number of drug combinations. The myeloma specialists call them triplets, and there are even quadruplets composed of four drugs.
There are also a huge number of clinical trials being conducted for multiple myeloma. SurvivorNet has extensive resources about how to access these options as well. At every stage of cancer, it is critically important to be your own advocate. For relapsed multiple myeloma it can be very challenging to discover the option that is right for you. Academic centers and large comprehensive cancer centers are places that most often have access to the latest treatments and research and its often possible to get a second opinion at one of these centers.
Avoiding Misdiagnoses
It’s important to say that in the vast majority of cases when you are tired, or have back pain, you do not have cancer. Even so, many of us in the SurvivorNet community have heard the stories about people who go to the doctor for a common problem and have a misdiagnoses after a doctor misses multiple myeloma. It has been reported that former NBC News anchorman Tom Brokaw, who has multiple myeloma, was initially misdiagnosed when his back pain was believed to be arthritis. In some cases patients may just report pain in different parts of their body, like Jerry Cowhig.
RELATED: Misdiagnoses After a Doctor Misses Multiple Myeloma
According to SurvivorNet advisor Dr. Nina Shah a hematologist from UCSF, “Multiple myeloma can be hard to diagnose because sometimes the symptoms are ‘non specific.’ It’s common for someone to say ‘You know, I’ve been having this back pain and I’ve always had but somehow, it’s just not going away.’ You may go to your primary doctor with these complaints, and it’s not unreasonable for that doctor to watch and wait or to do a few X rays and maybe not find anything.”
“At the first sign of anything abnormal in the blood or abnormal fracture, it’s important to say ‘okay, what am I missing? Is there something else maybe that could be causing this?’ And that’s often when we see a diagnosis of multiple myeloma,” says Dr. Shah.
The key here is to keep pushing until you feel 100% comfortable that your symptoms have been explained and taken care of properly.
How imaging tests could lead your doctor to the right diagnosis
Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important,” Dr. Rosenberg said.
Cancer research legend urges patients to get multiple opinions.
Understanding Multiple Myeloma & How It’s Diagnosed
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.
Expert Resources for Multiple Myeloma
- Clinical Trials for Multiple Myeloma: Why They Matter
- Adding Daratumumab to Front-line Therapy in Multiple Myeloma
- “An Important Step”: FDA Approves New Combination Treatment For Newly Diagnosed Multiple Myeloma Patients
- Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’
- Deciding Which Approach to Take During the Maintenance Phase of Multiple Myeloma Treatment
- Are the Treatments the Same for a Second or Third Relapse of Multiple Myeloma?
- Adding Sarclisa to Treatment– A Promising New Option for Relapsed Multiple Myeloma
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.
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
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.
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.
Do I Have Multiple Myeloma – Diagnosis and Workup
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.
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. Which 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 for Your Doctor
If you are facing a multiple myeloma diagnosis, here are some questions to help you begin the conversation with your doctor:
- What stage is my multiple myeloma?
- What are my treatment options?
- 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?
RELATED: The Revolution in Multiple Myeloma Treatment
For a full guide of resources, please check out SurvivorNet’s multiple myeloma guide HERE.
Contributing: SurvivorNet Staff
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