How to Prepare for Recurrence

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Hello, I am a GBM patient. I was diagnosed 9 months ago and had a relatively successful resection, followed by SOC TMZ/radiation. So far all is relatively well but having read numerous clinical studies since my diagnosis I am very aware that it may return.

My question is, what should I do/what are other people doing to prepare for a recurrence? I am thinking of signing up for a clinical trial or off label cancer drug use. It's a difficult spot as I don't know if I can join a clinical study without a recurrence but if I wait for a recurrence I don't know if there will be time to get into a trial. Off label drugs are always dicey but at recurrence I have less to lose, so why not. However which drug is my best shot? I want to use this time now to get myself ready so I am not rushing. I also want to make sure I do everything I can to fight this thing. I am in my 40s and otherwise quite healthy so I need to be sure I do all I possibly can do.

Thanks for anyone who reads this.

Branoc over 1 year ago

Hi Matt,

What does your oncologist say? I think the dilemma you have is a common one. You want to hit any cancer cells that are left now while you're strong but the treatments are pretty rough and may be better saved until they have more to aim at. The problem with that is that GBMs are so aggressive once they get going any treatment like PCV or rechallenging with TMZ is going to struggle to stem the tide.

The other option you may have is multiple surgeries. A lot of the cases I've read where people have gone 5+ years look like it's because they could have repeated surgery. Our oncologist said that in my wife's case it's unlikely because it's such a deep location and because the benefits are so much less if you can't then hit it with radiotherapy as you've had your lifetime dose.

I think your fighting spirit counts for a lot and I hope you get some more options soon.

All the best

Chris

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