8/5/24 to hd or not to hd

Less than one minute read time.

8 May 2024

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

Joolaboola over 1 year ago

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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W J 4 days ago in reply to Joolaboola

I’m sorry I missed your reply. I think I’m and many are treated as g4. I think it’s just a cover all bases approach. My letter was most likely a typo. The up top oncologist ( I don’t like to use names ) but he’s been on TV, he corrected the diagnosis mistake and I received a new letter, for me that is not a real change only a better prognosis. I avoid asking about it as it can hang there like a noose. Ignorance is bliss they say. And I’ve not changed really. 2023-2026 almost.
keep up the fight and sending happy hopes
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