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8/5/24 to hd or not to hd

Less than one minute read time.
W J

Apparently my notes ( lucky I asked about mine becoming a stage 4 on cns/who) say mine is not HD. My first letter says it is and noticed a note at the back saying it wasn’t so I’ll have them check that. Very tired today, chemo was on Monday been. And nausea 

Anonymous

  • Thank you for writing all of this. You may remember I had a similar diagnosis. I am still on Temozolomide as that seems to be working for me for now. On the grading, my docs decided G3 'but treat as G4' and then some forms said G4 but when I have checked it has still been 'treat as' so I have got them to change it. But mine is partial CDKN, not total - is that a difference for you? Hope you are doing well. It's a long old slog, eh?

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