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My Ongoing journey - research and PLATO trial

User
Posted 14 Jun 2014 at 12:07

 I went to see onco at RM last Thursday and it was very interesting. I can’t find my old thread her ( what a disaster this new site is ) so a brief resume .

Diagnosed 2010, with initial PSA 1,100 and extensive abdominal lymph nodes. Put on decapeptyl and psa fell 50% every three months, to a nadir of 2.2 in March 2012 since when PSA has been creaping up over the last two years :
2.2, 2.9, 3.6, 4.1, 4.6, 7.0, 11.0, 8.0, 7.83, 11.0,  and now 12.0

Brief period of anti-androgen withdrawal response from Sept 2013 to May 2014.

On referral to Royal Marsden in September 2013 they did a PET/CT scan which could not detect any sign of live cancer cells in the lymph nodes – just in the prostate and seminal vesicles.  

At my May visit to Onco I was seen by a research fellow as they are very interesting in my case, they say it is quite rare in the sense that it a) involved just lymph nodes and that these have receded so well. They invited me to join a couple of research programmes:

a)      Collection of clinical material from patients with hormone refractory prostate cancer.

b)      Feasibility Study of prostate Cancer Molecular Characteristics to Support the Future Delivery of More Precise Molecularly Targeted Treatment.

A part of this they then booked me a full CT and Isotope bone scan and full body MRI scan.

At last weeks visit to the clinic I was told that my scan were ‘both very good’ – no evidence of any live cancer cell except in prostate and seminal vesicles.

As long as the MRI scan shows no adverse results – they will keep me on the current treatment of just decapeptyl with maybe the addition of casodex. If however the PSA continues to rise then they want me to go onto the PLATO trial, that is: The Phase IV Randomised , double blind use of Enzalutamide for a year or two, and then add abiraterone. This is for chemo- naïve patients.

 All very interesting and I hope I can help the PCa community with this.

Anyone else here doing this??

 

 

 

User
Posted 14 Jun 2014 at 20:51
Mal

By chance someone has resurrected an old post of yours! I don't think the new site is a disaster, just having some teething troubles is all (I hope).

I also think another member mentioned this trial yesterday and was asking if anyone else was on it. I'd be happy as Larry if John got on it. I'll be asking our Onco at next visit.

Cheers

Allison

User
Posted 14 Jun 2014 at 21:12

Yes It looks like my husband might be put on it all dependant whether he meet criteria He has bone mets and has been in alot of pain which seems to be improving I have read through the literiature but its a lot to take in 

User
Posted 14 Jun 2014 at 22:03
Hi Mal,

I'm at a loss of why a double blind test of Enzalutamide is still being undertaken. It has been approved by NICE with I agree some limitations on its use. I started on the real thing yesterday, so why trials?

Life is for living

Barry ( alias Barrington )

User
Posted 14 Jun 2014 at 22:06
Mal

I would be very interested in your progress and the accompanying trial. I have to work out new strategies for myself in the wake of failure of Abby and the second line Chemo. Despite being a "Geek", I confess to hating the new forum and find it difficult to participate as much as I would like :(

Nil desperandum

Allister

User
Posted 15 Jun 2014 at 16:50

Barry,
It's the trial of Enzalutamide before chemo - for a year or two and then with the addition of abiretorone - still before chemo. Sorry the enzalutamide element does not have a plasibo, everyone gets it , but the phase 2 with abiretorone is with a plasibo. 

Personally - as i'm doing so well at the moment - I want to stay off chemo as long as is sensible, so for me this looks like a good route to take.

I agree Allister - I'm a computer / internet geek of many years standing and have used forums for years - and I hate this one, I just find it so clunky and not intuitive. Maybe back to the old alternative one - I wonder if it is still in use?. I will persevere with this and report my progress - I think somewhere I read that your hospital in Belfast may be taking part as well?.

Edited by member 15 Jun 2014 at 16:55  | Reason: Not specified

User
Posted 15 Jun 2014 at 17:19
Hi Mal,

Thank you for explaining that and in a way I can understand.

Allister thanks for your email in response to mine, I love it booking that cruise so far ahead, I've got to the end of this month to decide what I should do about the transatlantic cruise I've booked for October on the Oasis of the Seas.....decisions, decisions.

Life is for living

Barry (alias Barrington )

User
Posted 15 Jun 2014 at 18:32
Barry -

I've been following your story and I hope you can find a way to do that transatantic cruise, with this disease that's a difficult call.

I wish you all the best

Mal

 
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