At the end of the day on Friday Adrienne and I met with the professor hematopathologist who is responsible for the conclusions of my brain biopsy specimen (they looked at these with a panel of experts).
She made time for us to talk about the outcomes of my brain biopsy specimen. It is not a standard practice that a pathologist explains their findings to a patient. So it was nice that the hematopathologist made time available to talk to us. The professor that we spoke to is experienced in ultra rare T-cell lymphoma. The first thing that she told us was that I was the most exceptional case that she saw in her entire career.
Like I said in my post of two days ago, the biopsy specimens of my brain showed massive amounts of oligoclonal T-cells. Strictly speaking, cancer would by monoclonal, healthy manifestations of T-cells are polyclonal (and do not appear like tumors). What I have is somewhere on this spectrum, leaning towards malignant disease and requiring treatment.
These “oligoclonal T-cell expansions in lymphoproliferative disorders” are ultra rare. They tend to appear more in immunocompromised patients (although they are also super rare in this group). For example AIDS patients, but also patients treated with immunosuppressive drugs, such as transplant patients or sometimes patients with serious autoimmune diseases, can be affected.
You can imagine why they point their finger at Fingolimod, the MS drug that I had been using, as a possible culprit. In cases where an immunosuppressive drug is thought to be the cause, the treatment choices are as follows: 1. Stop the immunosuppressant and see if the disease goes away 2. Reduce the lesion size with steroids and see if the lesions go away afterward 3. In the case of B-cell proliferation treat with a drug against B-cells (rituximab) 4. Use chemotherapy to try and eradicate the disease.
I am now at step four since steps one and two failed, and step three is not applicable because I have a T-cell and not a B-cell problem.
World wide 130.000 patients have been prescribed Gilenya (Fingolimod, the MS treatment), and a case like mine has never been reported. Also with other immunosuppressants, these kind of T-cell proliferations limited to the central nervous system have not been documented. Let’s hope that my unique disease reacts exceptionally well to the treatment.