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
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
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.
Thought I’d check back in. Next week we have more scan results from a more in depth scan.
my husband keeps having quite bad bouts of tummy upset. I suppose this can be the chemo? Cannot also be an affect of tumour growing ? Not sure I’ve read anyone reporting similar.
Dek, I’m no expert - you need to ask your consultant. However, tummy upsets are quite common with Chemotherapy and that would be my first thought. Try asking for additional tablets.
Hi Dek
my husband also started this month with lomustine
i doent have any tummy upset but only hardmotion like he takes one week to pass
but i noticed he has difficulty in getting some words and losing of memories
I dont know what to do and how to deal with him he still young 38 yrs im so sad for him
i hope this lomustine can make make him better
please tell me if you think he is getting better
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