
[21-2-2017] An axial and sagittal slice of the contrast T1, containing the largest mass like enhancing lesion in the cerebellum
Last year, 8 July 2016 I started using Gilenya (fingolimod), this seemed to work well as some symptoms got a bit better and the disease did not appear to progress, until about the end of 2016. I participated in a scientific study about fingolimod in which they made MRIs every 6 months.
On the 20th of February 2017, I had another scan made for this study. I was recalled to the hospital for a clinical scan following the oncology MRI protocol immediately the next day.
Since then a rollercoaster ride started. They told me that evening that there were most certainly multiple lymphoma visible in my scan. With the largest one in the cerebellum (measuring 35mm). What followed was a long trajectory of exams and uncertainty.
Because this has become a very complex story, I have kept a blog where I have written down my story.
On Monday the 8th of May, we have been informed about final diagnosis and the treatment plan. They settled on ultra rare primary central nervous system T-cell lymphoma.
-Update July 14 2017: The hematopathologist told me that the final-final diagnosis was secret option five: An even rarer “lymphoproliferative disorder with oligoclonal T-cell expansion”, you can read about it in my blog post of that day.
Treatment started on the 16th of May (2017) and on the 29th of October I was released from the hospital after the last scheduled treatment.
The first part took place in the Jeroen Bosch hospital in ‘s-Hertogenbosch, the second part took place at the Spaarne hospital in Hoofddorp, and the third took place in the VUmc in Amsterdam.
Up to now (14th of November 2018), my MRI-scans have been clean. The lymphoma appears to be in complete remission and also the MRI-scans show no new active MS inflammation.
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