Has RT Failed

Has RT Failed

User

Posted 08 May 2017 at 21:02

Roy

Very disappointing especially as you have fought so hard, keep doing that.

Good luck.

Ray

User

Posted 08 May 2017 at 21:03

Roy

Very disappointing especially as you have fought so hard, keep doing that.

Good luck.

Ray

User

Posted 10 May 2017 at 21:18

Hi Roy
I don't post much but I follow
keep up the good fight

User

Posted 23 May 2017 at 12:04

Hi all

I saw a different Onco yesterday and it seems that they are advocating chemo which as you know I am not in favour of, they state the statistics of early chemo ( I am nearly five years into this journey) as they class me as new, due to the treatment path I have chosen and seemingly being responsive to hormones. For the first time on this journey I am at a loss, as all that is being offered is standard care so any ideas would be greatly appreciated as it seems I will managed now with no attempt at ridding me of this. One thing of note I have gleaned from my last two conversations is that something is about to be announced in the next few weeks but is secret at the moment but me being me I probed a little, but I can't say anything as we are not allowed to name names on here.

All the best

Roy

User

Posted 23 May 2017 at 15:34

Roy
I am forever hopeful that get rid treatment will come along. That's not just wishful thinking as going back to my joining days in 2004 the medicine chest was a matchbox in comparison to now. So in that sense I don't see chemo as losing the battle but one of stopping/ slowing down growth until more improved treatments come along.

Good luck

Ray

User

Posted 23 May 2017 at 15:38

Hi not sure if your not saying anything is about the abi trial ? I believe data is out in a couple of weeks ,my OH is on the abi/ Enzo arm so hopefully good news
Debby

User

Posted 23 May 2017 at 18:21

Hi Debby

I couldn't possibly comment lol but the person was very upbeat about this and believe me he should know, this is his baby.

Roy

Edited by member 23 May 2017 at 18:23 | Reason: Not specified

User

Posted 03 Jun 2017 at 12:18

This is the news I have hinted at. I had an hours talk with the professor named and he was very exited about it.

https://www.theguardian.com/society/2017/jun/03/prostate-cancer-therapy-study-abiraterone

I have put a separate post on here in case people don't read this thread

All the best

Roy

User

Posted 03 Jun 2017 at 18:43

Hi Roy,

This made the TV news this afternoon (as did a new drug for ovarian cancer). A Dr from Cancer Research UK suggested trials showed that combining ADT with Abiraterone would greatly improve the chances of extending the lives of men at risk, albeit with an increase in side effects. Are you being offered this?

Edited by member 03 Jun 2017 at 18:50 | Reason: Not specified

Barry

User

Posted 03 Jun 2017 at 19:15

Hi Barry

It is one of the options on the table, I will be seeing my Onco in two weeks to discuss the best way forward, but I must admit I am having trouble coming to a decision as to which way to go, as all the options are palliative in nature, so I find them hard to accept, as it goes against all my instincts regarding beating this. I know many will not agree with my rational but from the day I was born I have fought to live, I remember the district nurse coming and injecting me when I was only skin and bone, spending weeks on end in hospital laying in bed thinking about my own mortality, even at such a young age, so to give up now is not in my nature.

All the best

Roy

User

Posted 03 Jun 2017 at 21:25

I am heading that way ,
Got app with Onco on the 8th June at the RM I will be asking about this.

User

Posted 03 Jun 2017 at 22:53

I suppose as Trevor has been on Abbiraterone plus steroids and also bicalutamide 12 weekly although not as a trial for the last 18 months , something! Something , is holding our ship steady and long may that continue.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Jul 2017 at 09:13

Well I have finally agreed to go down the Chemo route as it seems it is the only "game in town" as NICE have not yet agreed to funding the Abbi tabs and my PSA decline is showing signs of slowing down and stands at 5.7 as of yesterday, so the chemo starts tomorrow for 6 cycles to try and hit the cancer cells that are showing resistance against the hormones. As you know I have my reservations, so wish me luck.

I must admit the wish me luck was prompted by my initial attempt to start my treatment yesterday, for which I prepared with the obliglatory steroids, drove 70miles only to be told the letter I received was wrong in stating my treatment was to start, then to be told it was for tests and a short tour of the facility, which was a dark and dismal place and I couldn't wait to get out and travel the other 70miles back home so not a good start.

Roy

User

Posted 27 Jul 2017 at 10:05

Why are you not getting the choice of Abi or Enzo Roy? From your bio I see you haven't had either of them before so I'd of thought there shouldn't be a problem for you having one or the other. That's unless your Onco is hanging on to them to give you after the chemo.

User

Posted 27 Jul 2017 at 10:28

Hi ColU_FC

It seems that Abbi and Enzo are only available to me under a trial or if I have failed Chemo, as the cost to the NHS is I believe £2300- £2900 and NICE won't pay as yet although the Stampede trial shows benefits, but the Oncos are pressing hard to get the criteria changed. What is your view on Docetaxel as I know you have been there and worn the t shirt.

Thanks

Roy

Edited by member 27 Jul 2017 at 12:21 | Reason: Not specified

User

Posted 27 Jul 2017 at 15:10

That's odd because my husband was prescribed enzalutamide but he didn't get on very well with it, he definitely expressed a preference for either enzalutamide or aberaterone instead of docetaxel and his oncologist agreed to try it for him, no mention of NICE so now he is going to try aberaterone, again no mention of the restrictions his consultant did say that he had a three month window of opportunity to try the two different treatments according to the new rules.

If all else fails then he would be likely to try docetaxel

User

Posted 27 Jul 2017 at 15:18

And yet I got Enzo before having to have chemo but they won't give it to you until after chemo! As the cousins say, "go figure".

Docetaxel. If I hadn't contracted pneumonia I'd say it was well worth doing.

However, I did get pneumonia and the last 11 weeks have been the worst of my life.

If last November I'd have known what was going to happen then would I have gone ahead with it? Probably not, but this would have meant a shorter life span.

If I recover from the effects of pneumonia in the next few weeks then I'll probably have a different view.

Bottom line is, respect days 8 to 15 in each cycle when you are likely to be neutropenic and do your utmost to avoid any infection.

User

Posted 27 Jul 2017 at 16:29

Roy, the stuff about NICE not approving Abiraterone is garbage. A deal was done where the treatment was free after a certain number of treatments, as indeed it was to me for several months. On that basis, NICE approved the use of it. Of course, the local NHS trust may still resist its use for those few months on cost grounds, but NICE can't be blamed on this one

User

Posted 27 Jul 2017 at 16:56

Abbi & enzo are approved for men that are hormone resistant; presumably Roy's onco can't actually say Roy is HR yet as the PSA fall is slowing rather than reversing? Plus he is in Notts :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2017 at 19:45

Roy ,

Trevor was prescribed Abbi almost 2years ago and yes as Lynn says he was hormone resistant at the time but chemo has not been an option for us due to the heart issues .

I would pursue this if I was you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Join the online community now.