Have you ever heard of Waldenström Macroglobulinemia? It's a long, hard-to-pronounce name, isn't it? It's actually a type of cancer that grows slowly in the blood. You may not have heard of it, because it's a rare condition. But that's okay, today we'll talk about it simply, in a way that you can understand.
What is Waldenstrom macroglobulinemia (WM)?
Simply put, Waldenstrom macroglobulinemia, or WM for short, is a blood cancer . It is a type of cancer called non-Hodgkin lymphoma, also known as lymphoplasmacytic lymphoma. It is actually very rare. Just think, even in a country like America, only three to four people out of a million develop this disease.
So, how does this `(WM)` develop? We have bone marrow in our body, and that is where our blood cells are made. This disease begins when some of the cells called `(B cells)` (these are a type of cell in our immune system, that is, the cells that protect us from diseases) in this bone marrow become cancerous cells.
These cancer cells, instead of being left alone, start making more cells like themselves. Just like weeds in a forest. What happens then? The healthy blood cells that our body needs have no room, and they start to decrease.
- When red blood cells are low, anemia occurs. This makes you feel tired and pale.
- When white blood cells are low, a condition called ``neutropenia'' occurs, making you more susceptible to illness.
- When platelets (cells that help blood clot) are low (thrombocytopenia), bleeding may not stop easily.
Not only that, these cancer cells produce an abnormal protein called `(immunoglobulin M)` or `(IgM)`. When this `(IgM)` protein becomes too high in the blood, our blood becomes thick, like honey . This is called `(hyperviscosity syndrome).` When the blood thickens like this, it becomes difficult for the blood to flow through the small blood vessels throughout the body. Then, a series of serious symptoms can appear.
The important thing is that there is no cure for WM yet. But don't worry. There are treatments that can help control symptoms, sometimes even eliminate them, and help you stay healthy. WM is often a slow-growing disease, so you can live well with it for years.
What are the symptoms of this `(WM)` disease?
Imagine, about one in four people with this disease do not show any symptoms . They only find out about this disease when they go to see a doctor for some other reason. But, when symptoms do appear, they often come on slowly . Let's take a look at what these symptoms are:
- Weakness and constant fatigue: Feels like the battery is dead.
- Fever: The body becomes hot for no reason.
- Anorexia: Not feeling like eating.
- Night sweats: Sweating a lot while sleeping.
- Weight loss: You become thin for no particular reason.
- Confusion: Difficulty concentrating, a bit disoriented.
- Swelling of the liver, spleen, or lymph nodes: Only a doctor can tell you for sure.
- Symptoms of peripheral neuropathy, such as numbness in the fingers and toes : It feels like a tingling sensation, or a loss of sensation.
- Symptoms of blood clotting: nosebleeds, bleeding gums when brushing your teeth, dizziness, headache, and blurred vision.
Just because you have one or two of these symptoms doesn't mean you have WM. But if these symptoms persist, it's best to seek medical advice.
What are the reasons for the formation of `(WM)`?
The main cause of Waldenstrom's macroglobulinemia is genetic mutations . More than 90% of people with the disease, or nine out of ten people, have a mutation in the gene called MYD88. About 40% of people also have a mutation in the gene called CXCR4. Both of these genetic mutations help the abnormal cells in WM to divide rapidly.
The important thing is that these genetic changes are not hereditary . That is, they are not something you get from your parents, nor are they something you pass on to your children. They occur throughout life. However, researchers are still not sure what causes these genetic mutations in the first place.
Who is at higher risk of developing this disease? (Risk factors)
There are some factors that increase the chances of developing `(WM)`. Let's see what they are:
- Age: This disease is most often diagnosed among people aged 65 or older.
- Race: This disease is most common among white people.
- Gender: Men are more likely to develop this disease.
- Other medical conditions: You may be at increased risk if you have diseases such as `(Hepatitis C)`, `(AIDS)`, `(Sjögren's Syndrome)`, or a condition called `(MGUS - Monoclonal Gammopathy of Undetermined Significance)` (this is a precursor to `(WM)`). However, it is important to remember that not everyone with `(MGUS)` will develop `(WM)`.
- Family history: If your blood relatives have had WM or other types of lymphoma, you may also be at risk.
What are the possible complications of this disease?
In some severe cases, WM can cause other complications.
- Amyloidosis: This is when faulty proteins are deposited in organs such as the heart, lungs, and kidneys.
- Cryoglobulinemia: In this condition, certain blood proteins that respond to cold accumulate in the limbs and clump together. This can cause pain and a blue/white discoloration (cyanosis).
How do doctors diagnose this disease? (Diagnosis)
Your doctor can use several tests to find out if you have WM. They mainly look for cancer cells and the IgM protein we talked about earlier.
- Blood and urine tests: Blood and urine samples are taken to check for signs of WM. They look for things like low blood cell counts and abnormal IgM proteins.
- Imaging tests: A CT scan or a CT-PET scan, which is a combination of a CT and a PET scan, is used to look for signs of WM inside the body. These tests look for things like swollen organs and lymph nodes.
- Eye exam: Checks for bleeding inside the back of the eye. This is a sign of blood clots.
- Bone marrow biopsy: This involves taking a small sample of bone marrow and looking at it under a microscope to see if there are any cancer cells.
How is `(WM)` treated?
As we have said before, there is no cure for this disease yet. Therefore, the best treatment is to relieve symptoms with minimal side effects . Your doctor will talk to you and create a treatment plan that is right for you. Here are some of the treatment options for `(WM)`:
- Watchful waiting: If you have no symptoms, your doctor may not start treatment. Some people with WM may not need treatment for years.
- Plasmapheresis / plasma exchange: This involves using a machine to filter out the abnormal IgM protein from the plasma, the liquid part of your blood. The cleaned plasma is then put back into your blood. This treatment is used to reduce the symptoms of blood clotting.
- Immunotherapy: This treatment uses your own immune system to destroy or slow down the growth of WM cells. The drug Rituximab (Rituxan®) is often given alone or with chemotherapy.
- Chemotherapy: Cancer cell-killing drugs can be given alone or in combination with immunotherapy.
- Corticosteroids: A type of steroid, such as dexamethasone, may be given along with immunosuppressive therapy and chemotherapy. They help fight cancer while also reducing the side effects of treatment.
- Targeted therapy: This treatment works by blocking proteins that cancer cells use to grow. Ibrutinib (Imbruvica®) and zanubrutinib (Brukinsa®) are two targeted therapies approved by the U.S. Food and Drug Administration (FDA) to treat WM.
- Stem cell transplant: In this, healthy bone marrow is transplanted to replace the bone marrow affected by abnormal cells. This is not done often, and is only done in selected patients.
When should I seek medical advice?
If you have been diagnosed with WM, talk to your doctor right away if you have any new symptoms or if you are concerned about any existing symptoms. Once you have been diagnosed with WM, it is important to ask questions to find out what to expect. Here are some questions you can ask your doctor:
- How serious is `(WM)`? How will this affect my life?
- What should I expect in the short and long term?
- Do I need to start treatment right away?
- What kind of treatment do you recommend?
- What side effects can be expected from the treatment?
What can I expect if I have this condition?
Not everyone with a slowly progressive disease like Waldenstrom's macroglobulinemia is the same. Research shows that 66%, or more than two out of three people, are still alive 10 years after diagnosis. However, survival times can vary with age . Most people over 65 (the age group most often diagnosed with the disease) die from causes unrelated to WM.
Many factors affect the prognosis of your disease. For example:
- your age
- Blood test results
- Type of genetic mutation (sometimes the absence of the `(MYD88)` mutation can indicate a bad outcome)
If you have questions about your condition, talk to your doctor . He or she knows you best and the factors that may affect your health.
Is there anything I can do to feel better?
Living with a lymphoma like Waldenstrom's macroglobulinemia can mean making some big changes to your life. It's important to use all the resources you have. Talk to your doctor about what foods to eat and what self-care measures to take .
To avoid feeling lonely, connect with others who have this rare disease. Even if you feel that way at first when you find out you have this disease, you are not alone in this journey . Ask your doctor and join support groups.
Finally, remember this.
Researchers have not yet found a cure for Waldenstrom macroglobulinemia (WM). However, they have found several treatments that make living with the disease easier . Many people live with the disease for years without any symptoms. New treatments are allowing people with WM to live longer than ever before, without sacrificing their quality of life.
If you receive this diagnosis, don't panic and ask your doctor about the short-term and long-term outlook. They will help you decide on the best treatment plan for you. Remember, with proper medical advice and support, you can live successfully with this condition.
` Waldenstrom macroglobulinemia, WM, blood cancer, IgM protein, hyperviscosity syndrome, bone marrow, lymphoma
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