Has RT Failed

User

Posted 14 Jun 2016 at 12:06

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

User

Posted 14 Jun 2016 at 13:25

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

User

Posted 14 Jun 2016 at 20:44

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

User

Posted 14 Jun 2016 at 23:16

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

User

Posted 17 Jun 2016 at 10:30

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 Jun 2016 at 11:03

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

Edited by member 17 Jun 2016 at 11:03 | Reason: Not specified

User

Posted 17 Jun 2016 at 13:09

Fingers crossed Roy....

Bri

User

Posted 17 Jun 2016 at 18:07

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

User

Posted 14 Jul 2016 at 14:00

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 Mar 2017 at 12:40

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 Mar 2017 at 13:04

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

User

Posted 07 Mar 2017 at 15:51

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

Bri

User

Posted 07 Mar 2017 at 18:17

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 Mar 2017 at 18:46

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

User

Posted 07 Mar 2017 at 19:14

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

User

Posted 07 Mar 2017 at 23:36

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

User

Posted 08 Mar 2017 at 10:34

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

User

Posted 08 May 2017 at 11:27

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

Edited by member 08 May 2017 at 12:39 | Reason: Not specified

User

Posted 08 May 2017 at 11:42

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

User

Posted 08 May 2017 at 12:29

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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