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Lomustine (CCNU)

Sofigirl
Posts: 1
Joined: Jan 2017

Husband has anaplastic astrocytoma Grade 3. Did 6 weeks radiation plus Temodar. Then Temodar 5 days out of every 28 day cycle for 6 cycles. Tumor has progressed. Soon he will begin Lomustine once every 6 weeks.  Anyone with experience on this drug? Side effects? Tumor is in right frontal lobe..."movement area" ...and we were told inoperable. 

sisterandbestfriend
Posts: 2
Joined: Oct 2017

My sister is starting this treatiment..How is your husband doing? And what is his dosage?  Am sooooo sorry for it all...lots of love, Judi

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Biggbuff
Posts: 3
Joined: Nov 2016

Hello Sofigirl,

My wife is in the same situation, can I ask how the Lomustine experice was for him? 

regards 

 Anthony

H0829
Posts: 4
Joined: Apr 2019

Similar situation to above.  Husband diagnosed 8 months ago and we did Proton beam radiation with TMZ and after four TMZ cycles recent MRI shows enhancement and 2 new foci.  Clinical trials recommended or Lomustine on its own.  Sounds like we would need to wait another 6 weeks to be candidate for Lomustine + Eflornithine blind trial but since we don't know efficacy and heard Eflornithine causes deafness not sure if good option.  So hard to navigate options and concerning to start new drug that may then exclude us from other trials.  4.5 months post radiation and would like to think pseudo progression but likely not.

 

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