Is anyone currently undergoing trials at Addenbrooks or Royal Marsden?

[Coolroses]

I’m waiting for responses from these as to trials but so far no luck.

[Lily-Anne]

I am really disappointed by Addenbrookes who were supposed to let me know about my tumour sample in February. It was another days work that Hubby lost and my team have chased them but still no reply

I was put forward for 4 trials and now giving up on them. The cynic in me says now I’m going to pay for treatment why would they pursue this!

I’d still go ahead for the braca neg PARP trial but no news there either!

LA xx

[Coolroses in reply to Lily-Anne]

Oh no! I am so surprised at that long wait. I’ve waited a week and thought it was bad enough. It’s not like we’ve got a sprained wrist is it?! Silly question but have you rung the person in questions secretary? Where is the braca neg PARP trial being done? Kerry x

[Jessica-DianeB in reply to Lily-Anne]

Hi Lily-Anne.

Where is the BRCA negative parp trial and what is it called please? Xx

[Lily-Anne in reply to Jessica-DianeB]

They told me it was at the RM but having messaged for more info have heard nothing. I’ve asked my CNS to follow it up for me so as soon as I hear I will post it. I think that there needs to be clearer info about what is available

Xx

[Jessica-DianeB in reply to Lily-Anne]

Thank you.

Yes I agree, although one of the things they said to me is that things are constantly changing. So I guess it takes time to update info. I’ve found a few trials that looked to be ‘open’ that on enquiring are no longer recruiting.

Hope you are ok xx

[CharlotteSo_UK]

Hi. My Mum is on a trial at the Drug Development Unit at the Royal Marsden in Sutton. We were referred to the DDU from the Fulham Marsden in August last year and it did take ages for them to confirm a trial for Mum but that said, they were waiting for the right one, which according to latest MRI results was the right thing to do. She actually started a MEK/FAK inhibitor trial in January of this year. Hope that helps.

[Coolroses in reply to CharlotteSo_UK]

That sounds better. I suppose it needs to be carefully considered. Hope she continues doing well on it.

[CharlotteSo_UK in reply to Coolroses]

Are you under the Marsden already or been referred? It took about 4 weeks from the referral to actually getting an appointment, and that was just between the two Marsden sites. Then it was maybe about 6 - 8 weeks before the profiling on the biopsy was completed. It was a long process. Mum was hugely frustrated by it, which really didn't help.

[Neona]

I was turned down for the first trial that they tried to get me on but they put me foward for another and I got on it. I had given up and was sitting on the sofa crying when the call came- so don't give up hope. I did wait quite a long time.

[Carpag]

Yes I am on the Eutroc Pissaro at the RM in Sutton trial started in February this year and so far have had two bouts of chemo. After the first round my doctor told me my Ca 125 had reduced from around 1224 beforehand to 119 so it seems to be going in the right direction. I had asked at my previous hospital to be referred as I heard about the trial at a day held at the Grand Hotel Brighton by another charity. It did take a while because my previous Consultant failed to make the referral until I chased them. To qualify it has to be a first recurrence and for the cancer to have something called T53. It is quite full on because chemo is given for 4 consecutive days, of at least 6 hrs each time, every 28 days.

[Coolroses in reply to Carpag]

I just looked it up. It looks like a possibility. You are clearly glad you are on it. Thank you for that info and highlighting the trial. All the best in going forward. Kerry x

[Jessica-DianeB]

I’m awaiting somatic tumour testing in the hope of consideration for Ariel 4z if that doesn’t come of there is talk of referring me to the early trials team. But timing will no doubt determine if that happens or I revisit pacliataxol weekly at home.

Good luck xx

[Coolroses in reply to Jessica-DianeB]

Taxol at home? Do you mean in your own home or local hospital? I went to Addenbrooks for the early phase trial but they said I was too symptomatic and so I’m on weekly taxol starting today. You are right, timing seems to be key. If I’m being philosophical I might say fate plays it’s part. I hope you get the outcome you need.