Experience of Lomustine

Hello. 
I am so sorry to hear your story and what you have to go through. My late husband went through something similar. He had 3 rounds of TMZ, post that he was able to go through 2nd surgery. Last year in March he started with Lomustine. It’s just one tablet every month. He had it for 3 months when they found it was not effective. Post Lomustine, the only last option left was another round of radio (reduced dosage). Having said this I hv heard people tolerating Lomustine for much longer. 

take care

You may ask your consultant or do your own research to see if there are any trials that may be going on a present that might suit your husband.

Sending a virtual hug.

Thankyou he now says he will take it x

No trials - I asked, feel like we live in the wrong country for GBM

My wife recently started Lomustine for a recurrence. It's a lot stronger than TMZ and her bloods at 3 weeks after taking were v low for platelets. We'll find out tomorrow if the platelets are back up again enough for next round - and also we'll get scan result which will hopefully show the new regime has stabilised / reduced the recurrence . If this doesn't work, I don't know what we'll try, but we're also pushing for an opinion on another surgery. I agree about trials - they seem to be for other people in other countries...

Good luck with your decision, Strawberry Blonde, and sending hugs.

Wishing her all the best with it, think he will start it next week but we have questions , thankyou for the information