Hi all, I'm guessing many of you know that temozlomide is much more effective in patients who have a methylated version of the MGMT gene. My wife's tumour doesn't have this and we could tell when the oncologist told us that it really does mean the surgery and the radiotherapy are the two main weapons that they can use. She's just finished her second cycle of standalone temozolomide and whilst it doesn't cause sickness (thank goodness) it does cause a lot of fatigue and we can also see from her blood test the impact it has on her immune system making her more vulnerable to infection.
The fatigue isn't completely debilitating but she does a lot less for the first and second weeks of a cycle. We all know the clock is ticking with a GBM so I question whether it's worth losing all this time to the fatigue.
When we see the oncologist in 2 weeks I'm going to bring this up as from reading I'm not sure how much benefit the temozolomide is in people without the gene mutation. I think the difficult thing is that if we don't take it then it feels like we're giving up as there's so few other options. Link here to article written by the same people who came up with the RT + temozolomide treatment used worldwide (Stupp protocol) which they themselves question in patients with unmethylated MGMT. Though I should point out they're only suggesting withholding so that other things can be tried. Withholding temozolomide in glioblastoma patients with unmethylated MGMT promoter—still a dilemma? - PMC (nih.gov)
I just wondered if anyone else is having the same dilemma or has discussed it with their oncologist?
Thanks
Chris
HI Chris
we faced a similar dilemma about three weeks ago after my husband's most recent MRI showed that there are two new active tumour areas and two potential areas.
His initial GBM4 was methylated but he declined the TMZ only treatment after the 6 weeks of oral chemo/radiotherapy. There's been no testing done on the recent new tumours so unsure if they are methylated or not.
The oncologist offered my husband TMZ (5 days on/23 days off) but qualified the offer by saying it only has a 1 in 3 chance of being effective at slowing the tumour growth. With TMZ he gave him " 9-6 months or considerably less" - not great odds.
He was given a week to decide what to do.and after much soul searching, he decided not to take the drugs. The risk of side effects and compromise to his current quality of life outweighed the benefits. Quality of life is far more important to him than longevity.
This is a debate with no right or wrong answer...there's only what is best for each individual. It's a heartbreaking decision for anyone to face.
When we advised the oncologist of the decision, he accepted it without question, leading me to suspect he too agreed in our situation it was the right one.
love n hugs
Wee Me xx
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