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, has it been 5-6 months on Lomustine? I think thats great news. My family member only tolerated one dose (it was every 6 weeks?) but it was too much, too strong for his body. He ended up downhill and needed second surgery... But wasn't able to recover since.... and the oncologist confirmed they will no longer give him any further chemotherapy treatment. So being on it, is as good as it gets. In a way. Keep up with your battle!
Thanks that’s great to hear. The last round his players are a bit low and he is really whacked on it to be honest. There has been some growth of tumour whilst on it so they may swap us again. They have also mentioned a possible clinical trial so let’s see. We have good days and bad days x
So a new chemo for us … IV this time. No clinical trial either as the tumour progression is too deep to reach
Hi Dek! Pardon my delayed response. It's exhausting when a family member is so sick, the whole village (extended family) are flying in and trying to support him too. IV - but not clinical trial? I actually have not heard much about this IV chemo. How are you guys doing, a few days in?
Where is the tumor growing now (when you say too deep?) Well, that's the 3rd chemo drug, right? Please fight on.
Hi my husband had just been switched to lomoustine after 6 months of tmz. They said today that there was slight progression hence the change. We are both a bit frightened to be honest as not sure what to expect next. X
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