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Has RT Failed

User
Posted 14 June 2016 11:06:20(UTC)

Sorry it hasn't gone according to plan Roy.

You're a fighter !

We can't control the winds - but we can adjust our sails
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User
Posted 14 June 2016 12:25:28(UTC)

You show great spirit Roy and that's half the battle. All the best for the future
Chris




If life gives you lemons , then make lemonade
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User
Posted 14 June 2016 19:44:09(UTC)

Very sorry about the way this is going Roy and hope together with your Onco a further treatment plan can be put in place that will give your cancer a 'bashing' that is more long lasting.

Barry
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User
Posted 14 June 2016 22:16:20(UTC)

Oh no! Hope the onco comes up with a great plan C

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


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User
Posted 17 June 2016 09:30:59(UTC)
Hi Guys

Thanks for the support. Didn't get to see Onco yesterday, but had a chat with the trial team, and the plan is to have another Choline PET/CT scan to see what's happening and hopefully pinpoint the problem and treat with SABR, so now awaiting appointment for scan in next few weeks.

Roy
User
Posted 17 June 2016 10:03:28(UTC)
Hi Roy,

I'm sorry things are difficult for you. I really hope they can come up with some long term treatment for you. I shall be keeping my fingers crossed for you.

All the Best,

Steve
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User
Posted 17 June 2016 12:09:53(UTC)

Fingers crossed Roy....

Bri

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User
Posted 17 June 2016 17:07:13(UTC)
Hi Roy,
I can't offer any advice re treatment but just wanted you to know that I am thinking of you, plus we both have our dogs as avatars.🐶
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 14 July 2016 13:00:44(UTC)
Hi

Just an update to my situation. I had a PSA test prior to my Choline scan which had risen from 3.9 to 4.9 in two weeks which I was expecting. Anyway I have had a consultation with the trial team today and it was a mixture of good and bad news. First the good news the SABR treatment has sorted the two areas of spread in the pelvis and no uptake of Choline in the pelvic bone, now the bad news, there is an uptake of Choline in my fourth left rib so it looks like I am to continue to chase this thing around my body, also there is what seems like a lesion in my lung but they don't know whether it is scar tissue or something more sinister, and as I wasn't expecting this didn't think to ask if it was on my last MRI scan, anyway I am to have a HD MRI scan to look at both areas of concern and see if the rib can be treated with SABR as it may be difficult with the movement caused by breathing. So I should know more in a few weeks once I have had my MRI and hopefully formulate a plan of action.

Roy
User
Posted 07 March 2017 12:40:58(UTC)
Hi Guys

I thought I would give you an update on the battle. Not good news I'm afraid my PSA has gone up yet again, showing a similar doubling time of 2.3 months from 16.1 in Dec to 39.2 yesterday but I am still off the dreaded hormones, but I'm sure that's going to change now as I will have to reign it back in. I was due to see the Onco this Thursday but that was change to May which is two months time so I have rung the Onco secretary to voice my concerns and will hear back hopefully tomorrow, the last time we spoke he was talking Chemo and Hormones, the Chemo is not the path I want to go down at present and will push for another scan to see what's happening, although I have a good idea where the problems lie if the discomfort is anything to go by in my left pelvic bone and ribs and possible spine so nearly a full house. It's nearly 5 years since I found out I had Cancer and I am thankful for every day, so it's time to dust myself off and continue the fight, I just need to convince the Onco not to give up the fight, so fingers crossed.

All the best

Roy
User
Posted 07 March 2017 13:04:04(UTC)

So sorry to hear this Roy. Not sounding good but seems you have a few options left to keep up the good fight. I really wish you the best of luck




If life gives you lemons , then make lemonade
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User
Posted 07 March 2017 15:51:53(UTC)

Keep fighting Roy. Can I ask, why didn't you go on HT in Dec when the PSA hit 16

Bri

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User
Posted 07 March 2017 18:17:05(UTC)
Hi Bri

As the PSA had only risen by 2 points in 3 months it was agreed to see if thr RT had affected the rib or was the 2 point rise coming from somewhere else. I would have been happier if at the start of the SABR treatment, I had remained on hormones until the PSA had recorded undetectable but they wanted to see the results without hormones skewing the data, but that's water under the bridge now.

Thanks Roy
User
Posted 07 March 2017 18:46:17(UTC)

Roy

Sad to read your latest update. There could well be a problem with your bones but there's no problem with your attitude so keep fighting.

Ray

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User
Posted 07 March 2017 19:14:26(UTC)
Hi Bri

My response seems to have disappeared, so I will try again. Initially as part of the trial I was required to come of hormones so that they could gauge the response without them skewing the results. When the rib was treated the PSA after 3 months was only 2 points higher so it was decided that we leave out the hormones to see if the activity was still coming from the rib and it had been slowed down by the treatment as that would have shown a doubling time of 1 year. I must admit I didn't want to leave hormones out of the mix at the start and would have rather continued with them reigning in the cancer until it became hopefully undetectable then to come off them to see if there was a rise, as I believe it would have been a more logical approach but I had to adhere to the rules of the trial.

Thanks

Roy
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User
Posted 07 March 2017 23:36:50(UTC)

Hi Roy,

Very disappointing news, particularly considering the extent you have gone to to identify and treat. There may not be a clear best way forward but you mention chemo and perhaps it might be helpful if you could ask your consultant how strongly it is felt this would be advisable sooner rather than later.

As regards posts disappearing, this is my second attempt to post this. The first time a notice flashed up saying that new posts were sent to the moderators for moderation or words to this effect and then this disappeared and my reply was lost! Still the concessional glitch clearly.

Barry
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User
Posted 08 March 2017 10:34:10(UTC)
Hi Barry

Thanks for the comments. As regards Chemo I am not convinced it will be of much benefit to me but I will listen to his take on it. As you know I have preferred to take a more targeted approach to this so I need to now how many areas are affected to formulate a plan forward if possible. I am not the type of person to just follow the so called "Gold Standard", as very early on I realised it was just a another NICE way of saying cost effective (if you forgive the (pun) so I think it's time to think outside the box as this not a condition that lends itself to a "one size fits all approach". I know many will disagree with my thought process, but even now I do not have any regret in the path I have taken. Since I travelled to Munich I always wondered if the PSMA gallium or even Choline could be utilised as a "Trogan horse" to deliver a killer blow to the cancer as it is so readily taken up by Pca, and now I am aware of this happening in Germany and Australia which I have posted on the forum before, so I will be showing my Onco the trial results and ask his take on this approach or whether Radium is the way to go as this only targets the bone and is less destructive.

Thanks

Roy
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User
Posted 08 May 2017 10:27:46(UTC)
Hi Guys

Well the results are in and I am afraid it's not good news for me. The Choline PET/CT scan shows that the SABR has been successful in that the the 4th left rib has no sign of cancer, but it is now in the 4th right rib and SABR trial has run out of money so it's no longer an available option for me. Now for the rest of the bad news, it has now spread to several lymph nodes in the upper abdomen, which I am told cannot be ripped out or eradicated so Chemo is being touted but I have told the Onco if it's not going to be effective then I am not interested, so he is talking about having a AR-V7 test to see if Abiraterone etc would be effective or not.

On the plus side the Bicalutamide has reduced the PSA to 8.7 from 38 in 4 weeks.

So there we have it, God knows how many mirrors I have broken or what I may have done in a previous life but I am paying for it now.

Roy
User
Posted 08 May 2017 10:42:31(UTC)

So sorry the news isn't better for you Roy.

Fingers crossed that Abiraterone will help you

We can't control the winds - but we can adjust our sails
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User
Posted 08 May 2017 11:29:24(UTC)

Highly disappointing news. Had it not been for the node involvement, as the SABR did a goog job on the left wth rib it might have been worth considering the same treatment for the right counterpart even if you had to fund it. However, as you intimate, the node involvement would now indicate that systemic treatment would be more appropriate and if adopted will hopefully deal with the cancer wherever it is.

Hope further news will be more encouraging.

Barry
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User
Posted 08 May 2017 20:02:50(UTC)

Roy

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

Good luck.

Ray

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User
Posted 08 May 2017 20:03:40(UTC)

Roy

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

Good luck.

Ray

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User
Posted 10 May 2017 20:18:07(UTC)

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

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User
Posted 23 May 2017 11:04:41(UTC)
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
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User
Posted 23 May 2017 14:34:22(UTC)

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


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User
Posted 23 May 2017 14:38:32(UTC)

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

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User
Posted 23 May 2017 17:21:39(UTC)
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
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User
Posted 03 June 2017 11:18:07(UTC)
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....herapy-study-abiraterone

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

All the best

Roy
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User
Posted 03 June 2017 17:43:24(UTC)

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?

Barry
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User
Posted 03 June 2017 18:15:18(UTC)
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 June 2017 20:25:46(UTC)

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

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User
Posted 03 June 2017 21:53:51(UTC)
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
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User
Posted 27 July 2017 08:13:30(UTC)
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 July 2017 09:05:25(UTC)

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.

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User
Posted 27 July 2017 09:28:03(UTC)
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
User
Posted 27 July 2017 14:10:39(UTC)
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
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User
Posted 27 July 2017 14:18:02(UTC)

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.

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User
Posted 27 July 2017 15:29:20(UTC)

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

AC

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User
Posted 27 July 2017 15:56:30(UTC)

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


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User
Posted 27 July 2017 18:45:55(UTC)
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
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User
Posted 28 July 2017 06:56:18(UTC)
Well sat in the Chemo waiting room waiting to be poisoned. Wish me luck.

Roy
User
Posted 28 July 2017 08:05:34(UTC)

Best wishes. My husband had session 2 last week.

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User
Posted 28 July 2017 08:34:07(UTC)

Hope it goes well for you Roy.

Barry
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User
Posted 28 July 2017 09:20:42(UTC)

Shame there's no bar. Always seems to be a delay at ours. Sending wishes !




If life gives you lemons , then make lemonade
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User
Posted 28 July 2017 09:33:15(UTC)
Hope it goes well Roy
Are you having it at city hospital
Don't deny the diagnosis; try to defy the verdict
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User
Posted 28 July 2017 11:15:20(UTC)
Best wishes Roy. Hope it does a good job and you have minimal side effects. Ian.
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User
Posted 28 July 2017 16:04:05(UTC)

Hope it's gone ok Roy.... keep fighting mate

Bri

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User
Posted 28 July 2017 16:36:53(UTC)
"Hope it goes well Roy
Are you having it at city hospital"

Hi Si, no I am travelling to the QE2 in Birmingham.

Thank you all for your support, it is very much appreciated.

What was supposed to be a 30 minute procedure turned into 2 hours, so hoping for an improvement in the time as we go on, unfortunately by that time my frozen pineapple melted and my mouth feels like something has died in it,so I need a plan B, so any tips guys?

Thank you all

Roy
User
Posted 28 July 2017 16:47:23(UTC)

Thermos flask ?




If life gives you lemons , then make lemonade
User
Posted 28 July 2017 17:28:06(UTC)
Hi Chris

Thanks for the tip, I used a thermos bag with cooling pad but I will test the flask before my next appointment.

Roy
 
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