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Options for Peritoneal Metastases

bfg
Offline

Morning,

I've recently been diagnosed with Peritoneal Metastases following esophogeal cancer treatment (FLOT/Operation/FLOT) last year and the remaining option is not filling me with confidence.

I am aware of treatments "out there" but appear to be up against a brick wall of "sorry, we don't offer this on the NHS".

So this is really to see if there is anyone on this forum who may have either direct experience or can point me in the direction of someone who is more versed in new treatments.

There are a number of sub-sections and questions - so please bare with me.....

1) PIPAC - appears to be a relative new treatment option, still going through trials but appears to be more focused in the UK for colorectal primaries.  Looks good on paper as it directs chemo straight to the tumour (peritoneal is a tough one to treat as it is not good at taking up chemo via intravenous) and because it's a fraction of the dose has less side affects.

Does anybody know if it is available privately in the UK?  (I've been offered it privately in both Denmark and Belgium)

2) Nivolumab - immunotherapy based treatment, but not available as 2nd line.  Slightly frustrating as people have responded well to it where esophogeal cancer has been identified with peritoneal metastases.  

Again - Does anybody know if it is available privately in the UK or has anybody been prescribed this for PM?

3) Trials abroad.  I have the potential to be accepted for a trial in Belgium that involves both PIPAC and Nivolumab combined treatments and am waiting for the final costings/details.

Does anybody have any experience in attending a trial abroad?

Please respond with any questions or PM if appropriate.

cheers

bfg

  • Hello BFG

    I'm sorry to hear about your most recent news. Undoubtedly it will have come as a blow to hear this. 

    I've had a look through the forum and whilst I can see some mentions about PIPAC they've all been in relation to bowel or stomach cancers and mainly in a clinical trial context. Hopefully, if there is anyone on the forum who has had this treatment either in a trial or abroad they will post to share their experiences with you. 

    We do have some information on our website about treatment for advanced oesophageal cancer which you may find helpful but I'd also suggest giving our team of nurses a call when they're back in the office after the bank holiday weekend. I'm sure they will be happy to talk things through with you and offer any advice and support that they can. They're available from 9 am to 5 pm on 0808 800 4040.  

    Keep us updated with your next steps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thanks for the response Jenn.

    My condition appears to fall between the proverbial cracks. Ie. If I hadn't had the operation then I would have been a candidate for nivolumab which apparently can result in better outcomes and symptom management of the Peritoneal metastases.

    And I found the same with PIPAC - there is a much bigger group of people with colorectal primary and peritoneal metastases than gastric primary, hence the focus. 

    I have spoken to one of your nurses and they were fantastically helpful and let me rant on for a good 20 minutes.  :-)

    I'm just trying to find somebody out there with experience of my condition and provide some reasonable advice on whether to push ahead with the trial or try and fund it myself in the UK.

    Cheers

    Bfg

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