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From Belgium – Joanna Van Reyn: Living Long With Waldenstrom’s

At the end of May 2007, some weeks before my 73rd birthday, I went to my family doctor for my annual checkup. With peace of mind! For several years I was often tired, extremely tired. But that was due to ‘the age,’ the doctor said. I just had to adapt my activities. Fatigue, diplopia and tinnitus – I linked it all to my age.

All the same, I expected good results. Unfortunately, the blood tests were not so good, and after a bone marrow biopsy the hematologist I was referred to told me I had WM, an indolent, slow growing cancer that had no cure. He also told me I had had the disease for several years. It might have been worse, I thought – I have lived years without worrying about it.

Immediately, I began a course of Leukeran, a mild chemotherapy.

Curiously, the news did not hit like a bomb! Maybe I did not fully realize what I had been told. In any case, I was more concerned about my upcoming trip – a visit to the Biennale in Venice. Could I travel? No problem, came the reassuring answer from the doctor – the treatment has little or no side effects.

Relieved, I flew to Venice. And two months later, in September, I went for a trip to Germany – Kassel (the Documenta contemporary art exhibition) and Muenster (the Skulptur Projekte exhibition of public artworks). The exhibitions were worthwhile and the weather was splendid, but Venice was too hot and too tiring. And in Germany I caught a cold that didn’t respond to any medication . . .

Were all those negative experiences due to WM? Or were they side effects of the treatment?

I did not know. Maybe I underestimated the disease. Maybe WM was not as innocent as I thought or liked. I had to collect my thoughts, and I started looking for more information. This led me to the website of a contact group for multiple myeloma patients, CMP Vlaanderen. In the absence of a support group for WM, it had kindly taken in some members with this disease. There I found support and understanding and more insight into WM. Little by little, I got involved in this rare disease, and in early 2008 I became the contact person for WM!

At the end of 2007, on the eve of Christmas, I went once more to the hematologist. For six months I had taken two pills three times a day. What would the blood test say? The IgM level had dropped to a near-normal value, but at the same time the red and white blood cells had – literally and figuratively – become deficient.

As the treatment with chlorambucil stopped, my blood could recuperate. A long process! A never-ending process! Still, I float on the edge of anemia. Still, I have tinnitus. Still, I have vision problems: double vision, blurred vision, bleeding on the retina, and the consequences of it: confusion, loss of concentration, imbalance while walking . . .

Apart from those physical discomforts, the fatigue remains. As it gets worse, it takes longer to recover.

In October 2010 a course of treatment with Multigam was started; lasting six months, this was intended to fortify my failing immune system. After a two month break, in May 2011, two more months of the Multigam infusions were administered.

In the end, this treatment was determined to be without beneficial effect. The doctor decided that no further (aggressive) treatments should be done because of the adverse infusion reactions and the poor results. Before leaving the consulting room, I was given the good advice to listen to my body, to take a rest when I was tired, and not to bite off more than I can chew.

In mid-2013 things began going wrong. The inexplicable extreme fatigue was getting worse, the blood values were ​​decreasing, and the IgM was increasing. And in November, the hematologist proposed starting a treatment with rituximab. “Impossible,” I said, “too much to do in preparation for our symposium!” – a symposium in cooperation with the Belgian Hematological Society (BHS) that would take place on January 30, 2014.

Treatment delayed.

Yet I felt sicker and weaker: night sweats, daily fever, loss of appetite, without energy, every effort was too much. I counted the days until I could go back to see my physician in late March.

On April 25, in serious need of treatment, I went to the day clinic for the first infusion of rituximab monoclonal antibody therapy. This first infusion was complicated by hypotension. For four consecutive weeks I went to the day hospital. On May 15 I got the last infusion, and, as icing on the cake, a blood transfusion.

Then came the anxious wait – would treatment be effective?

ForestIt took a while. But little by little, what was too low increased and what was too high declined.

In September the doctor asked me to take part in a clinical trial with ARGX- 110. I agreed without hesitation. Unfortunately, because of a steady weight loss and gastrointestinal complaints, I had to undergo gastroscopic examination. The result of it is long in coming. In the meantime arGEN-X, the maker of ARGX-110, completed enrollment. Now I’m still awaiting the result of the gastroscopy and clearance to take part in the next phase of the clinical trial.

The longer I live with the disease, the better I understand it. Once I accepted the restrictions imposed by WM, the disease became my inseparable compagnon de route [companion on the road]. Thanks to the good care of my treating physicians, I still continue serving the interests of my fellow sufferers in Flanders. And I hope to do this for many years, sincerely and with a smile!

Joanna December, 2014

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