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  • #21557
    MarianA
    Participant

    My son underwent this treatment in June. It was brutal to say the least. His first scan three weeks after treatment showed some tumours had reduced, some remained the same. There was an overall reduction of 18%. He has had his second scan today. There has been no further tumour reduction and a hip tumour (site of a harvested tumour prior to TIL) has grown giving a lot of pain. My question is: can tumour reduction restart after a period of inactivity or has the treatment definitely stopped working? We are all in despair, we thought there was light at the end of the tunnel and this has been extinguished. My son has had Zelboraf (stopped working after four months) and Ipi (didn’t appear to work). Do we have any more options? Any thoughts would be very very welcome. Thank you.

    #62406
    Catherine Poole
    Keymaster

    There would be a couple of options. Where did you do the TIL? Are you in the US? I’ve not known any patients who progressed after the TIL to then have regression again. But I would ask your doctor about this. I would definitely look into PD1 and also the ADC we’ve discussed here, put Jonathan into the search for the discussion.

    #62407
    MarianA
    Participant

    Thank you for your reply Catherine. My son had the TIL at Manchester (UK). I will do as you suggest re Johnathan. I read from a previous post that you have recently had surgery. Are you OK? Best wishes to you

    #62408
    Hein
    Participant

    Marian,

    It is still possible that the treatment is still working. They can check in bloodtests if the T-cells are still there, in right numbers and still active.

    #62409
    MarianA
    Participant

    Thank you, Hein. The last blood test showed the T cells were still in his blood. However the fact that his hip tumour has returned/regrown and other tumours have remained the same seem to point to the fact that it is not working according to my son’s doctor. I did wonder. Seemed strange that one tumour in particular should grow significantly. I can’t find any PD1 treatment sites in the UK. Best wishes to you

    #62410
    Catherine Poole
    Keymaster

    Marian,

    There aren’t any sites in the UK, however Europe may have some slots available. Are you interested in travel for Pd1? Email me personally and we can help find you some slots there.

    #62411
    MarianA
    Participant

    How do I e mail you privately Catherine?

    #62412
    Sara
    Participant

    I think there are Pd1 sites in the UK, The Christie, The Royal Marsden and The Oxford John Radclife, maybe Southampton too. I believe there is a trial running for Ipi naive patients and also one that I have signed up for which is for those who have progressed following Ipi, the catch being there is only a 66% chance you get assigned to the pd1, the other 33% get chemo, I will find out on Friday which arm of the trial I have been assigned to…

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