Sir Robert Ogden Macmillan Centre

PET-CT and Biopsy results

We found Ed Miliband's house during a few days in Norfolk waiting for all the test results, then back to hear the verdict at the Sir Robert Ogden Macmillan Centre in Harrogate. Unfortunately I have extensive disease again but the good news is a place on a trial has been found for me at the Christie Hospital in Manchester, either for Bispecifics or CAR-T. I will hopefully be assessed over there very soon and then I will know more. Brilliant news and a huge relief. The radiologist's report on the PET-CT said: "Marked interval deterioration in the appearances consistent with transformed high-grade disease. Nodal disease 27cm and SUVmax 14.0 in retroperitoneum, several other nodes including ones SUVmax 10.5 and 11.9." Pretty grim really. The biopsy result though was still Follicular despite the radiologist's expectation. This is no surprise to me, FL is supposed to be indolent low grade, but mine is not indolent at all and has always behaved more like high grade. Unfortunately this catches the Consultants out and my disease progresses further than it should before treatment is underway. I was given five days x 100mg Prednisolone to relieve symptoms and buy some time as my kidney function is starting to be affected. Fortunately it's very clear to the MDT that more chemo (Bendamustine) isn't really the answer and it's now time to try Bispecifics or CAR-T.