Petosemtamab

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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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • 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 BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • 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

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • 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.