Trial Refusal (UK NHS)

[Hillwalker87]

Hello,

My fathers oncologist referred us for a trial at Royal Marsden in London but this was refused on the grounds of location. Has anyone ever appealed a refusal to any success at all? Many thanks in advance.

[NickJoy]

That is absolutely disgraceful. I think part of the problem may be the cross authority funding issue. If you can show that your health authority will fund treatment then I don't see what grounds they have to refuse the trial. You are based in NI? Which trial is it? Could you approach the trial leader or prostate cancer research uk about this? Their nurses are very helpful. Trials held in London are surely not supposed to exclude the rest of the country?

[Janhpr in reply to NickJoy]

Hi can you tell us what the trial is, you say he was not eligible because of location is this because of funding or travelling to and from the RM. My husband was offered a trial at RM but involved weekly visits.

My husband has widespread bone mets, diagnosed in 2008, PSA 64 with bone Met in hip, has had HT, chem+strontium 89, PSA continued to rise, followed with abiraterone 6yrs with good quality of life then became toxic to liver, RT 2019, PSA rising in 2021 and Dec 2021 PSMA Pet Scan found widespread avid PSMA bone mets, just had privately 2 treatments of Lutetium 177 his PSA has come down from 10.4 to 6,08 but has not reduced the bone mets as yet, 3rd Lu this week, Lutetium hopefully on NHS by Nov. Good to share experiences

[Hillwalker87 in reply to Janhpr]

Hello, they never specified why, just that the distance was too great. I was wondering if anyone on here has had a similar response and whether they appealed this. I'm sorry, I can't remember which trial we requested, it was a while ago. Is Lu-177 available on NHS come November then?

[Hillwalker87 in reply to Janhpr]

Hi it was a Th-227 trial

[Brysonal in reply to Hillwalker87]

It does say though it’s active it’s no longer recruiting which might make more sense than the distance

clinicaltrials.gov/ct2/show...

Maybe worth looking through the database and suggesting an alternative to your onco. Maybe one of the parp inhibitor trials if he met the conditions?

[Brysonal in reply to Hillwalker87]

There seems a lot going on at UCLH which is far easier to get to than the Royal Marsden which is a nightmare

findastudy.uclh.nhs.uk/#/tr...

Another vaccine phase 1 trial and parp inhibitors ( I was offered Amplitude) but the UK still appearing to be behind he curve on Bite and cart-T trials unfortunately

[Hillwalker87 in reply to NickJoy]

Hi nick, we are based in the North West of England and the reason provided was distance

[NickJoy in reply to Hillwalker87]

That is crazy - if you want the trial I would definitely appeal - can your MO help? Talk about Post Code lottery!

[Engraver68]

This does seem strange, I was accepted for the TRAP trial by Alison Rose of Royal Marsden 2 years ago.

All of my scans and SABR treatment were undertaken by Clatterbridge Cancer Centre Liverpool and Wirral. My Consultant approved the application and this trail was funded by Prostate Cancer UK.

I would have thought if your local cancer centre were to approve this and be able to carry out the treatment locally and monitor your progression, it would be beneficial to have a wider cohort of candidates.

The only restriction I could foresee would be if the treatment was only available at Royal Marsden, but then if you were able and willing to fund your travel expenses then why not!.

I would speak to you consultant and see if he/she can influence this decision.

[Hillwalker87 in reply to Engraver68]

Thank you for your advice, I will pass this on to my father

[j-o-h-n]

Ask them if they think your Dad is going to walk there? We have a word for them in the US it's Aholes.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/20/2022 7:22 PM DST