GALAHAD Trial : Niraparib: Experiences... - Advanced Prostate...

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GALAHAD Trial : Niraparib

Miguelnumerouno profile image
8 Replies

Experiences, views, side effects etc . of any gents taking part in GALAHAD , Niraparib PARP inhibitor trial greatly appreciated.

Thank you.

Michael UK.

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Miguelnumerouno profile image
Miguelnumerouno
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Tall_Allen profile image
Tall_Allen

I just spoke to the head of Janssen in North America that is sponsoring this trial. FWIW, he is enthusiastic about it.

Miguelnumerouno profile image
Miguelnumerouno in reply to Tall_Allen

Please see reply to you both.

Michael

riichardd profile image
riichardd in reply to Miguelnumerouno

Hi Michael.

Sorry I aren't able to help you with your question mainly because I aren't quite as far down the road as you are with treatments and trials but I think I am heading in the same direction. Thank you for your posts they are of great help to me and I'm sure many others. if you wouldn't mind I have just one or two points you could maybe help clarify

Are the Marsden doing the gene mapping as part of the Galahad Trial?.

My oncologist has written off to a number of hospitals doing trials to see if they have anything what might be suitable for me. This last week I've been to Leeds and Newcastle both of which have nothing for me but have put me on their waiting lists. Next Tuesday I'm going across to the Christie at Manchester. I'm a little concerned that the Marsden hasn't been in touch yet because I know that prof Johanne De bono was on her list of contacts. I'll have to chase that one up next week.

I see you have been taking the "medical tourism route" to Heidelberg for the Lutetium 177 treatment. Is it still the case that the vision trial is not up and running anywhere in the UK?

If not and there is nothing for me at the Christie next week. I may as well crack on to Heidelburg, Ive seen an excellent post from yourself giving step by step instructions on how to get treatment there.

Thanks Richard

Miguelnumerouno profile image
Miguelnumerouno in reply to riichardd

Richard.....

Has your enzalutamide failed or are you hopefully keeping matters at bay with it?

Most of the trials of the GALAHAD ilk will require progression after Abiraterone or Enzalutamide.

Royal Marsden did a CTC test on me.....circulating tumour cell....and if I report positive on that they will access my Dx biopsy.

I dont have the details here with me but net will give you :

Genetics Trials unit.

Royal Marsden.

Fulham rd .London SW3

I do not know the status of VISION now in UK....sorry.

Have a look at NEPTUNES Trial UK too.....I'm not up to speed with it but it may be applicable to you.

You've seen my post on Lu177/act225 Heidelberg....let me know if I can assist further.

Michael UK

riichardd profile image
riichardd in reply to Miguelnumerouno

Morning Michael. Thanks for the tips.

The enzalutamide only lasted about three months tops. They've withdrawn it now so i'm having to rely on Zoladex and repurposed drugs from the care Oncology clinic in London. I was going to try Indomethacin as well but I've been warned off it in no uncertain way because I have to take blood thinners for AF. My doubling is time about four weeks now so it's imperative I find something which can knock it back for a while. Hence the urgency to contact the Marsden to see what they can offer or see what the Christie have Tues then on to Heidelburg. I've still got Jevtana left on the NHS but my oncologist says it's likely hood of working is slim and I'm probably better off looking for trials. So fingers crossed for us both. I hope your treatments are successful !

Miguelnumerouno profile image
Miguelnumerouno in reply to riichardd

Have you checked if The London Clinic is doing Lu177.....I know they weren't in mid March 2019 but were setting it up.

Trials also at Guys,London.

There is BARCODE 2 ...genetic testing first then Carboplatin if positive....definitely being ran at RM April 19.

Very best to you also!

Michael.

Miguelnumerouno profile image
Miguelnumerouno

Thank you Nalakrats and

Tall Allen :

I was tested at Royal Marsden London on 11 April 19 for ,

amongst others, BRCA 1 and 2 so awaiting results.

If positive I will be eligible for GALAHAD and my commencement upon that trial is open ended time wise , ie hopefully I will be able to visit Heidelberg for treatment number 2 ( and more ) of Lu177/act225.....so

"one in the bag " so as to speak. I will update on that aspect later .

There is very limited information

( compared to other trials) on GALAHAD on the net in terms of other's experiences so I'll have to dig a little deeper.

If I have understood correctly ....of the 4 or 5 PARP inhibitors that are in research / available there is no proven " best one to have " as yet.

Do you concur with that or have any further information?

I feel we are in a very exciting time at present with magnificent trial work going on and thank you both for your continued advice and direction on here.

Michael UK.

Miguelnumerouno profile image
Miguelnumerouno

Exactly what I mean.....whatever it is will be thr cost of Aspirin .....one day !

Michael

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