“It doesn’t appear to be as bad as we assumed”

Nils at the gym, a good distraction.

Of course, I was nervous today. I was up extra early, and we even went to the gym with Nils just like every Tuesday. Straight afterward we took a train to the hospital in Amsterdam. Yesterday, at the end of the day, my case was again discussed in the multidisciplinary council at the VUmc. Together with the hematologists, pathologists, neurologists, neurosurgeons and oncologists, they discussed the situation. Today at noon I and Adrienne were invited for a meeting with my neurologist to talk about their conclusions.

When exiting the tram, the first thing that caught my eye was the ominous “cancer center”.

The title of this paragraph was the first thing she said “it doesn’t appear to be as bad as we assumed”. So what does that mean? The whole situation is very complex and very atypical, that surely is the catch phrase. The pathology report reads: “Het geheel is uiterst lastig te interpreteren” which means “it is very difficult to interpret [the biopsy samples]. What they see in the biopsy is an abnormal amount of T cells. But these T cells do not resemble cancerous cells; they do not appear to all originate from the same cell that divides uncontrollably (cancer). It is puzzling why they are there. The hypothesis is now that it is a B cell problem that triggered all the T cells to be there. T cell problems are even rarer than B cell problems. Perhaps my MS medication might have triggered this somehow, as it is an immunosuppressive agent, but this has never been described before. She told us that these cells could be precursors of a lymphoma, so they need to be monitored very closely (additional MRIs).

An idea would be to treat with Rituximab, a monoclonal antibody that targets B cells. This also treats MS, which is a good thing. But since they can’t rule out a T cell problem, messing with the B cells might give rise to unexpected adverse events. That is why she told us that she first wants to discuss the options with the hematologist. They will schedule a new MRIs as soon as possible (this week). In this MRI they want to see what the lesions look like now, perhaps stopping Gilenya would have had a positive effect, although it is probably impossible to judge, the Dexamethasone has probably shrunk the lesions anyway. They also want to check whether the biopsy was taken in the right place, this should still be visible on the MRI (in the worst, but very unlikely, case they missed the mass and sampled only the boundary). Then if all looks ok, they will stop with the Dexamethasone and do another scan 2-3 weeks later. Then if all seems well, a treatment could be started, if the hematologist agrees this might be Rituximab.

All in all, it is the best news I could receive in this situation. Of course, things are not at all miraculously solved, but given the entire situation, knowing that it is not a definite lymphoma, or even something worse, is good news for now.

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