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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 


  • Hello Dek

    My husband was on Lomustine last year. He had it for about 3 months. In Jan 23 they found that TMZ wasn’t effective and he had 2nd surgery. Post the surgery in Feb 23, he started with Lomustine. He had it till May 23. It’s one tablet every month. 


  • HI Dek

    Lomustine isn't a drug that my late husband was offered so I can't comment from any personal experience during his journey. This is a safe and supportive space so I am sure that the others will be along shortly to share their experiences with you.

    I did look Lomustine up on the main website for you. here's the link Lomustine | Macmillan Cancer Support There's some great information in there.

    You mentioned time frames of prognosis.... I'm wary of these after sharing G's journey with him. Time frames are best guesstimates based on published averages and no one is average. Everyone is unique and everyone's situation is unique. Everyone will react and respond differently to the  various treatment regimes so please try not to focus on time frames here.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now I'm sending you a huge virtual hug and lots of positive energy.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • So we have a scan this week it’s been almost 5/6 months since the last and since they put us on lomustine. Feels like a very long time to have left it right? We are all very anxious. 

  • Good luck Dek. It does feel really long but since Lomustine is taken only one tablet every month they don’t do frequent scans. Hope all goes well. Sending you lot of positive energy, love and hugs. 
    mtake care of yourself. 

  • Hi Dek. Hope your staying well and tolerating Lomustine so far.  How are you finding the side effects? My ex-partner has done the full max dose of TMZ (6 month cycles, maybe 4 or more sets in total) over 4 plus years, finally we tried TMZ daily for 2 consecutive months, the cells kept growing so doc switched to Lomustine also.  Your ahead of us, by about 3 weeks.  I asked the oncologist, they said after Lomustine, there is 1 or 1.5 more chemo drugs to try.  Stay strong and keep us updated. 

  • I find lomustine really knocks for six and he’s extremely tired. When rested is then better. 
    So we have been on L since Jan and that was the last scan aswell. The most recent scan as ref’s above showed the new dots that caused the switch of chemo have gone but others have appeared. So it’s trying to be active but seems whatever we are doing at the moment is working a little bit.