My sons new diagnosis Hepatoblastoma, clinical trial?

FormerMember
FormerMember
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Hello,

I'm wondering if anyone has knowledge/experience on the PHITT trial, or sodium thiosulfate? OR, to be honest, anything I could read to make my decision better informed, at the moment I am feeling overwhelmed trying to work out what's best for my child!

I'm Ashleigh and my son George has just been diagnosed with stage 3 hepatoblastoma (liver cancer). I have SO many questions but my main one is regarding a clinical trial he has been offered. The trial is called PHITT and is an international trial, but has been opened specifically for him in Southampton. He would be put into a randomised arm of the trial with 3 different treatments. The one I am concerned about is the intensified Cisplatin only chemotherapy - the course is 12 weeks but in a higher dose. I've read a lot about the effects of cisplatin, toxicity, hearing loss, kidney function etc... and would be very worried. I have read cisplatin is extremely effective but seems at a high risk.  I asked about sodium thiosulfate to protect his hearing but his consultant said this has been linked to protecting the tumour too? 

thank you!

  •  

    Hi Ashleigh and welcome to the online community

    I'm very sorry to hear that your son has been diagnosed with liver cancer and it's natural that you want to find out all you can about the trial he has been offered a place on. 

    I don't have any experience with the PHITT trial but I thought if you joined and posted in the liver cancer group you might find others who have experience with this particular trial.

    To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post your question after selecting 'start a discussion' or join in with existing conversations by clicking on 'reply'.

    I have also found this information for you about cisplatin, which you may or may not have already seen, and this about the PHITT trial.

    When you feel up to it, it would be really useful if could pop something about your son's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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