Hi everybody,
I was part of a phase three randomised trial of this drug earlier in the year. Unfortunately I drew the "short straw" and was put on the control arm - docetaxel.
After some weeks the hospital halted treatment as I was experiencing unpleasant side effects. There had also been some progression of the disease.
I would be very interested to hear from others who have been on similar trials of this drug. It has shown to be extraordinarily effective in treating this particular cancer - when combined with immunotherapy - and I am investigating the possibility of a judicial review, the thinking being that if a drug is this effective then those on the control arm should be allowed to switch to the main drug under similar circumstances to mine.
Hi Jim
Can you give the name of the trial ?
Edit. I found it.
I'm not sure of the protocol here but I wish you the best in getting help
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks Dani.
I’ll pursue a judicial review on my own if that’s what it takes but the case is much stronger if it can be shown that the withholding of such a drug affects a significant number of people.
I've looked up the timeline. The trial started in July this year and doesn't report till February 2028 so nobody can gauge efficacy till then.
However I have found a very useful publication in the journal of the Royal Society of Medicine concerning the ethics of trials. I've sent you a friend request so that I can give you the link
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Not sure what trial you’re looking at. Mine started in April. Phase 2 efficacy was reported as 66% in the UK. Phase 3 trials in the US reported results in the seventies.
NCT06496178
I am making assumptions. You are best placed so sorry
Nevertheless you should look at the publication on the ethics of trials.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks for sending me the link - I may have read it already but, once I’ve figured out how to access it…. I’m new to this forum. ;-)
OK Google
Giving and taking; ethical treatment assignment in controlled trials and click on the sage journals publication
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I have read it before but thanks anyway.
It relates to trials involving placebos, which was not the case for me.
(Docetaxel was the standard of care arm - and I was informed that I would be placed on this arm beforehand)
I have read it before but thanks anyway.
Yes I should have realised. Awful situation you are in.
i can’t recall anybody else on this drug but maybe somebody will pick up
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Very very frustrating when, in all likelihood, I would be in remission by now, had I been given Petosemtamab.
It’s exciting knowing that there are some excellent treatments in the pipeline, nonetheless.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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