Lomustine

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Has anyone here been on lomustine longer term since being on TMZ? 
 I wasn’t at the appnt where they switched the chemo and so I’m wondering if they said at this time there is a time frame of prognosis that we face as we haven’t been told this yet 

thx 

  • Sounds very similar to us. We managed 6 months on lomustine and then again some slight tumour progression so they have changed the chemo again and now we are starting carboplatin which will be an IV chemo. 

  • Wishing you all the best. I remember hoping J would be well enough for lomustine but oncologist said she wasn't strong enough. I know it's hard to stay positive but we'll all be thinking of you both both xx

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  • Hi 

    I thought I’d reply to this. They moved us onto carboplatin last week which is an IV chemo. I believe this is now our last chemotherapy option. 

  • Yes those would then be carboplatin and avastin … 

    how are you guys getting on?