July 1, 2026 – Waldenström Macroglobulinemia
In June 2020, I was diagnosed with Waldenström's disease. That was six years ago now.
The good news? Effective treatments are available, so you're not getting rid of me anytime soon! The less encouraging news is that Waldenström is a chronic condition. It can be treated, but it cannot be cured.
What is Waldenström macroglobulinemia?
Waldenström's disease (lymphoplasmacytic lymphoma) is a rare form of lymphatic cancer. This cancer is mainly located in the bone marrow, the soft tissue inside the bones where new blood cells are produced.
The cancer cells grow slowly, but they gradually take up more and more space inside the bone marrow. As a result, healthy blood cells have less room to develop. These abnormal cells also produce excessive amounts of a protein called IgM. When too much of this protein builds up in the bloodstream, it can cause a wide variety of symptoms.
Around 250 people are diagnosed with Waldenström each year in the Netherlands. Most patients are over the age of 65. I was only 40 when I was diagnosed, placing me among the small minority—about 1%—of younger patients. That's when I jokingly started calling myself Kankerkneusje, Dutch for "Cancer Loser." It eventually became the name of this website.
When did my Waldenström's disease begin?
Watch and Wait
In 2020, I entered what doctors call the Watch and Wait phase. This means treatment is postponed until the disease progresses to the point where waiting is no longer medically responsible. It's a strange situation: you're ill, but you're expected to wait until you're ill enough to start treatment.
For me, this meant blood tests every three months, regular appointments with my hematologist, the occasional bone marrow biopsy, and CT scans.
At the time of my diagnosis, it was the height of the COVID-19 pandemic. Because of my condition, I was eligible for an early COVID vaccination. I received my first dose on March 28, 2021, and have since had a total of eight vaccinations. In the end, I still caught COVID—the "Moluccan variant," picked up at a fantastic Moluccan wedding!
When I asked my hematologist what I could do to improve my outlook, the answer was simple: "Minimize DNA damage: don't smoke, preferably don't drink alcohol, eat a healthy diet, maintain a healthy weight, and stay physically active." Fortunately, that wasn't a difficult adjustment for me, as I was already living a healthy lifestyle.
What symptoms do I experience?
Since my diagnosis, I've experienced most of the common symptoms, including fatigue, shortness of breath, and heart palpitations caused by anemia.
In addition, my weakened immune system makes me more prone to infections. It's not that I became seriously ill—I usually just keep going—but each time it took me a little longer to recover.
Because my blood has become thicker than normal (hyperviscosity), I experience migraines, blurred vision, dizziness, and tinnitus.
And yes, brain fog can also be a symptom. Personally, I don't think I suffer from it—but other people might have a different opinion!
Learning to pace yourself
When you're in your forties, pacing yourself isn't usually something you think about. For me, however, it became essential. In practice, this meant I could still work and meet my responsibilities, but I often had to skip social activities because my energy gradually declined.
By 2021, blood tests already showed that I had anemia. Even so, with determination, a healthy lifestyle, careful pacing, and a positive mindset, I was still able to do a great deal.
Why am I only sharing this now?
When I was diagnosed in 2020, I still felt perfectly fine and didn't see the need to tell everyone. The disease was discovered purely by chance during a routine blood test for fatigue. Of course, I immediately told my family and a few people I saw regularly.
For those who knew my father, Kees Ezinga: I told him about my diagnosis two years before he passed away. I told my mother, brothers, and sister only last year.
I also wanted to postpone carrying the label of "cancer patient" for as long as possible. Ideally, I would have gone through treatment quietly, but the people around me had other ideas. This disease doesn't just affect me.
Eventually, I decided to share it with the world. And honestly, that wasn't easy. Allowing myself to be vulnerable turned out to be much harder than I expected. A psychologist would probably have plenty to say about that.
Because Waldenström's disease is quite complex, I've chosen to explain everything here on this website. That way everyone receives the same information, and I don't have to tell the whole story over and over again.
Why start treatment now?
Even though I still look reasonably fit—if you ask me—and my CT scans apparently confirm that I have a god-like physique, my doctors decided that it was time to begin treatment.
My hemoglobin level of 6.7 mmol/L had become far too low. My body has been working overtime to transport enough oxygen, leaving me constantly exhausted.
The bone marrow biopsy also showed that my bone marrow now consists of 80% cancer cells. At my first biopsy in 2020, this was 60%. There is now very little room left for healthy blood cells to develop, increasing the risk of serious infections, bleeding, and organ damage.
Things moved quickly after that. In mid-June, my hematologist told me it was time to start treatment. On June 30, I met with the oncology nurse, and my first treatment followed on Thursday, July 2.
Aren't there other ways to increase your hemoglobin?
Eating iron-rich foods—beetroot, a large steak, or a mountain of spinach like Popeye—sounds like a good idea, but unfortunately it hardly helps in Waldenström's disease. The cancer cells crowd out the production of healthy red blood cells in the bone marrow, and no amount of spinach can fix that.
There's really only one way to raise my hemoglobin: treat the cancer cells.
Treatment
After six years of watchful waiting, the time had come for my first treatment to reduce the cancer cells, hopefully allowing me to carry on for many more years. The best possible outcome is that Waldenström's disease goes into hibernation for several years. How long that quiet period will last is impossible to predict; it varies from person to person. Doctors refer to such a period as a remission. If my familiar friend Waldenström decides to take up too much space again in the future, another treatment will follow.
The treatment is called DRC and consists of Dexamethasone, Rituximab, and Cyclophosphamide. Dexamethasone and Rituximab are administered through an IV infusion, while Cyclophosphamide is taken as tablets. This combination of medication and chemotherapy is given once every three weeks at the Wilhelmina Hospital Assen (WZA).
Update – August 13, 2026
After two DRC treatment cycles, my therapy was changed to an R-CP regimen (Rituximab, Cyclophosphamide, and Prednisolone). The reason is simple: my stomach decided that Cyclophosphamide tablets were no longer welcome. From now on, I will receive the Cyclophosphamide by infusion instead.
Are there side effects?
Yes, there's a long list of possible side effects—but I deliberately haven't studied them. I feel well and I'm actually looking forward to getting started. I've spent long enough in Watch and Wait.
For now, there's no need for me to take sick leave. I'm optimistic that the treatment will be effective and that things will gradually improve from here. So I'll continue with my normal daily routine, including all of my work.
Is Waldenström's disease hereditary?
Generally, no. However, there are a few rare families around the world in which Waldenström disease or other forms of lymphoma occur more frequently. In those specific families, there does appear to be a hereditary pattern. However, the genetic mutation or gene responsible has not yet been identified, so there is currently no genetic test available.
What about my family? According to my hematologist, my case is not considered hereditary, even though both my maternal grandfather and my paternal grandfather's sister were diagnosed with Waldenström's disease. Having the disease appear in two branches of the family is certainly unusual, but it is not considered a reason for concern or for family screening.
How am I doing mentally?
I've had several years to get used to the idea. Because I know I've always made healthy lifestyle choices, I don't blame myself. Mentally, I'm doing well, and according to my doctors, that mindset is important during treatment.
I'm also grateful to have been born in the Netherlands, where I have access to excellent healthcare.
One practical downside of having cancer is that it's now extremely difficult to qualify for a mortgage or life insurance. So my dream villa in Ibiza—with a helicopter pad for the DJs—will probably have to remain a rental.
Stay informed
You can do so through this website. At the bottom of the page, you can leave your email address. The website is public; I have no (medical) secrets, so feel free to share it. And yes, I'm active on Instagram again, where you can follow the updates as well.
If you have a question that isn't answered here yet, feel free to ask. There's a good chance others are wondering the same thing, and I'll gladly add the answer to this page.