PLATO TRIAL

Hi Deb1E

What's the difference in treatment that you are being offered from the standard protocol?  There must be different Plato trials as I was offered one which sounded a bit different to what others have had.

Mine involved 2 different higher doses of radiotherapy over the same amount of time.  

Deb x 

Hi

The leaflet does imply that there are different parts to the trial - I have been offered the same treatment as Nikki65 although my tumour is still in situ.

Deb1E

Hiya

Yeah obviously different to mine then. I think its because mine is more advanced.

Incidentally I did go for the trial and although I'm still part of it in terms of questionnaires and extra follow ups, I wasnt selected so am receiving standard protocol.

Deb x 

Hi Deb1E,

i took part in the PLATO trial.
My tumour was small, had no nodal spread and early diagnosed..The diagnosis was in July 2017 and treatment started on Sept 4th. I had 23 days treatment of Chemo radiotherapy rather than the 28 days.. The treatment is slightly different and i found that as a member of the trial i felt that i was more secure.. You have more checkups and follow up appointments also..
I never had any surgery to remove the tumour and i was cancer free less than 6 weeks after my treatment ended..
I remain cancer free still and its 2 years in October.. My consultant is really pleased with how i have coped and that i had less side effects than people who had the standard treatment..

There are others on this group who have also taken part in the trial. But it may be that all our tumours are at different stages.
If you decide to put your name forward you may not be chosen as it is computer randomized..
I am more than happy that i was chosen to be part of the trial and it has worked well for me.
I suggest you ask all the questions you need to make the decision that is right for you..

Hope this has helped

Sue 

Hi Sue

Thanks you have helped a lot.  Lots to think about over the weekend

Deb1E

Hi Deb1E,
If there's anything else you really want to know please ask..
Sue 

Hi Sue,

I’ve been offered both PLATO trials, which one depends on my PET scan results. Currently they think I’m T2N1M0 which means I can be in the trial offering two extra levels of radiotherapy.

If it turns out I’m actually T2N0M0 then I can have the 28 days reduced to 23 days trial instead.

What was your staging, if you don’t mind me asking.

Trish

Hi Trish,
My staging was T2N0M0 and i had the reduced  23 days  instead of the 28 days..
I was told that the trial was randomised by computer so was not guaranteed .. Not sure how your hospital has described it to you..
I am in Cardiiff and seem to be one of the few that has not had any surgery..

I hope that you are fortunate(cos lucky is not the right word) in your results and you are able to take part in the trial if you choose to do so..
I am so glad that i did..
i took every precaution i could from moisturising my nether regions weeks before my treatment, to changing my underwear to the shorts variety( Cotton of course no polyester) as the skin can get very raw and burnt in the groin area ..My best advise was to get a portable bidet.. a must.. cos when you are sore you can lower your botton into the warm water..it is so comforting.. If you suffer from radiology cystitis peeing can be so painful .. and sitting yourself in the warm water and relieving yourself is much less painful!!
Sorry to be graphic but believe me you will be grateful for the advise..
There are many little things that help and not all is for everyone as we all have different side effects..I hope that these little snippets can help you ..but if i can give one final thought..
YOU CAN DO THIS... It is do able.. and KEEP POSITIVE..
Sue

I’ve just signed up for the PLATO ACT5 trial.

My staging is T2N1M0 so I’ve been offered the trial where I can have up to two increased levels of radiotherapy.

T xx

Hi Suzycue,

I’m new to the website.

I was diagnosed in early June with T2N0 in anal margin which resulted in a loop colostomy to ease my symptoms.  I have also been offered to participate in PLATO ACT 4 stage. After reading all the threads here after being terrified of the treatment and especially the side effects, it’s heartening to know that the trial is successful for the majority. 

I’m due to start treatment on 16 September (standard up to now) and read that you moisturised weeks before, can I ask what cream you recommend or used?  I’ve been looking for good underwear for weeks and can’t find anything suitable. 

I agree with the portable bidet, it really is a godsend for pain relief. 

I’m so glad I found this website, everybody has positive attitudes re treatment and side effects but I’m still terrified of it. 

Many thanks

Linda