Trial - don't know what to do

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I need to make a decision as to whether to do a Plato trial.  It sounds a bit different to previous posts I have read.  My Cancer is advanced and affected the nodes around.  The trial basically involves the standard 5 weeks Chemoradiotherapy, but with higher doses of radiation as the only difference (same time frames).

I just don't know what to do as there's no way of knowing what my reaction is going to be like on the standard treatment. My family and friends say its my personal decision, but I hate having to made decisions, I just want the professionals to tell me what to do and what is best for me!!

Any thoughts??

Deb

  • FormerMember
    FormerMember

     can you help @Debh1 please? 

    @Debh1 Nikki went through treatment last year as part of the Plato trial. Her staging was different to yours but hopefully she can outline what the advantages of being on Plato trial were for her personally. May help you to make up your mind.

    I think the main advantage of being on the trial will be regular monitoring and more check-ups.

  • Hi Deb,

    I’m involved in the Plato Trial. I was diagnosed very early stages with no nodes involved & no metastasis, T1N0M0. My treatment on the trial involved chemo infusion day 1 of treatment with chemo tablets twice a day each day of radiotherapy throughout & my radiotherapy was of slightly reduced strength & 23 days opposed to the standard 28. There’s only a couple of us on here as far as I’m aware involved in the Plato Trial. The reactions people have to this treatment are really varied so there’s no way of knowing how you’ll react until you’re actually in treatment to be honest. My reaction was pretty minimal during treatment, I had a bit of radiation cystitis from week 2 & some soreness weeks 3 & 4 back & front but my skin reaction peaked day 11 post treatment then things healed pretty quickly after that & I returned back to work 5-6 weeks post treatment, although you mention your radiotherapy will be of higher strength. All I will say is the side effects of the radiotherapy accumulate gradually so you learn to deal with them as they do on a day to day, week to week basis & your radiotherapy team, nurses & oncologist with provide you with creams etc., to help you through. Apart from the slight difference in length of treatment etc., I fill in quality of life questionnaires every so often & the trial dictates that I’m also followed up by oncology throughout where as if you’re disease free at your 3 or 6 month post treatment checks you’re generally discharged into surgical care I think as opposed to being seen by oncology. 

    It’s a difficult time anyway & totally understand that it feels like extra pressure making decisions about your treatment path, my oncologist suggested the trial to me as I’d had my tumour removed via surgery prior to being seen by oncology & to be honest the standard treatment was never even mentioned to me. Maybe request another meeting with your oncologist for a further discussion about it if you’re finding it difficult to decide it may give you a bit more clarity. 

    Nicola x

  • Hi Deb I was similar stage to you 4 cm and a few nodes on the right side effected. Treatment was this month 3 years ago I was never offered any trials I thought this was for small tumour and no spread? Not sure, what I think might be useful is by being in a trial you will get a very thorough follow up which is good. I’m fine 3 years later after standard treatment apart from soreness and cant seem to sort out the constipation! 

    Hope everything goes ok

    amanda xx

  • FormerMember
    FormerMember in reply to 1redhawk

    Hi 

    3 years! amazing this gives me and other stage 3er's lots of hope.

    Sx