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Continued HT after RT

User
Posted 14 Jul 2014 at 10:46

Hi All,

I'm off to see my oncologist tomorrow, the first meeting since finishing my RT sessions. This has caused me to start thinking ahead, I was fully focussed on RT but now that hurdle is behind me I'm pondering what the next milestone will be... 

I'm currently on Zoladex as my standard care path with a side order of Abiraterone as part of my Stampede trial treatment.

I fully expect to stay on my current treatment regime for quite a while yet but would like to take on board views and experiences of people who have already travelled my road.

My Stampede treatment is a two year stint so I expect to stay on Abiraterone and Zolodex for at least another year until the Stampede trial times out. 

 

So, I'm guessing that I've got a year until any change of direction would be considered by the hospital team, but what after that?
Do they like to take you off treatment to ascertain whether the RT has been a success? Or is it only done on my request?
Is there anything I should be considering now to prepare for that year down the road?

 

I've suddenly found myself in a new and unknown area and it feels a bit weird.
If I'm honest I want (need?) to understand if RT was successful. It's my one and only chance at a cure and I guess I want to know NOW! I appreciate that things don't work that way and the effects of RT are still making changes in the prostate area. 

I'll be having this discussion with my Oncologist tomorrow and I think I know what the conversation will be.  

 

Any input appreciated!

 

Cheers

 

Kevin

User
Posted 14 Jul 2014 at 10:46

Hi All,

I'm off to see my oncologist tomorrow, the first meeting since finishing my RT sessions. This has caused me to start thinking ahead, I was fully focussed on RT but now that hurdle is behind me I'm pondering what the next milestone will be... 

I'm currently on Zoladex as my standard care path with a side order of Abiraterone as part of my Stampede trial treatment.

I fully expect to stay on my current treatment regime for quite a while yet but would like to take on board views and experiences of people who have already travelled my road.

My Stampede treatment is a two year stint so I expect to stay on Abiraterone and Zolodex for at least another year until the Stampede trial times out. 

 

So, I'm guessing that I've got a year until any change of direction would be considered by the hospital team, but what after that?
Do they like to take you off treatment to ascertain whether the RT has been a success? Or is it only done on my request?
Is there anything I should be considering now to prepare for that year down the road?

 

I've suddenly found myself in a new and unknown area and it feels a bit weird.
If I'm honest I want (need?) to understand if RT was successful. It's my one and only chance at a cure and I guess I want to know NOW! I appreciate that things don't work that way and the effects of RT are still making changes in the prostate area. 

I'll be having this discussion with my Oncologist tomorrow and I think I know what the conversation will be.  

 

Any input appreciated!

 

Cheers

 

Kevin

User
Posted 14 Jul 2014 at 21:58
Sandra,

my onco and I have a good relationship.

I'm inquisitive by nature and I tend to ask about the whys when I'm told anything related to PCa.

I gave one of his registrars a hard session prior to signing up for RT which ended up with the registrar running off to find my onco who gave me an honest ' talking to' before patting my wife on the arm and giving one of those looks.

Which is why I'm fairly confident I already know what the answer will be tomorrow.....

Still, it keeps them on their toes though!

Best wishes

Kevin

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User
Posted 14 Jul 2014 at 11:35
Can't help with the questions Chilled but just to say Good Luck for tomorrow.

Hope you get the answers and information you need.

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 14 Jul 2014 at 12:20
Kevin,

I started HT (Prostap) July 2013 and joined STAMPEDE - control group - during September. I completed RT - 37 fractions - mid May. I have locally advanced PCa, lymph node involvement - 2 nearby - but M0. PSA was never high: 5.2 on diagnosis Apr 2013, dropped to 0.097 pre-RT and 0.024 immediately post-RT.

My STAMPEDE treatment schedule extends for 5 years to 2018, perhaps because I'm in control group. One oncol told me that there will be more arms added to STAMPEDE in the near future, so I could remain on STAMPEDE indefinitely. This means I'll stay on HT indefinitely.

I've so far had one post-RT consultation with STAMPEDE medical oncol who told me no more scans planned. They intend relying on blood test results which, of course, include PSA. Like you, I wondered about the effectiveness of the curative intent RT. The answer seems to be that HT/RT is a combination treatment and it's the overall effect that is being tracked by the blood test results. That being said, the numbers of men with advanced disease and very low PSA on this board make me a little uneasy. I'm seeing the clinical oncol on Thursday and will raise it again. After that, my next consultation is with medical oncol during mid-August.

I'll be interested to learn what your oncol says.

Viv

User
Posted 14 Jul 2014 at 15:05

Thanks all for the support and feedback,

 

I'll report back here what was discussed, though I think it will be HT / Stampede for another year and lets's talk again. 

I got a dressing down pre RT when I poked about what the indicators for RT success were, so I probably have PITA written across the top of my notes....

 

Cheers

 

Kevin

User
Posted 14 Jul 2014 at 18:14

"so I probably have PITA written across the top of my notes...."

That's their problem, not yours Chilled.

It's important you are confident of the expected outcome of any treatment. No point in having it otherwise as you'll always wonder whether you made the right choice.

Good luck anyway.

Edited by member 14 Jul 2014 at 18:15  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 14 Jul 2014 at 21:58
Sandra,

my onco and I have a good relationship.

I'm inquisitive by nature and I tend to ask about the whys when I'm told anything related to PCa.

I gave one of his registrars a hard session prior to signing up for RT which ended up with the registrar running off to find my onco who gave me an honest ' talking to' before patting my wife on the arm and giving one of those looks.

Which is why I'm fairly confident I already know what the answer will be tomorrow.....

Still, it keeps them on their toes though!

Best wishes

Kevin

User
Posted 17 Jul 2014 at 09:13

Morning all,

I had a useful chat with one of the registrars yesterday as the head honcho was tied up.

 

First of all, some personal good news, my PSA count is now sub 0.01 i.e. undetectable - whoo!
I didn't get a chance to find out from the doctor as the trial nurse came out to see me in the waiting room with a beaming smile on her face saying we have just been discussing you... Bless her. Hugs all round!
A bottle of red was cracked open on return to the house...

 

Post RT Treatment

So, interestingly, there seems to be two general strands to post RT treatment.
 * If your PSA at diagnosis was below 50 the view is continue with HT for a total of 3 years and then come off of it.
 * If your PSA at diagnosis was above 50 then HT will be used indefinitely until such time that it ceases to be effective.

 

My PSA was 500 at diagnosis so that was not what I wanted to hear. After some discussion it was agreed that as I'm on the trial the trial timings would be the guide and then a review would take place post trial. So my course is set for the next year. 

I expressed the wish that I'd like, at some time in the future, to come off HT and see what transpires and I was not told a definite 'no'.

 

Prognosis

Also at diagnosis I was given a three year prognosis. I asked why as over one year down the track my PSA is as low as it can be and that two more years seems a bit inaccurate. I was told that statistically presenting with a PSA of 500 at diagnosis indicates a three year prognosis, which is what I was given. A year down the line I was told 'there is no reason to believe that is an accurate assessment anymore'  However, no new estimates were offered.
So it looks like I'm non the wiser and just need to continue to ride that train until something changes.

 

AOB

Cycling - I've been given the OK to restart cycling again, so that should get a few pound off my middle with any luck.

Massages - I was on holiday earlier this year when a thread was started regarding massages. The bottom line was that the views were 50/50 so I decided on the pragmatic view and stopped having them, even though I was in massage central - Bali.
I asked what the 'official' view was yesterday and was told it should be fine. I then asked about lymphatic massage (which sometimes is thrown in as part of the massage package) and was told that would be fine as well, for me, as I have no mets. However I was told to avoid massage to the groin area. (insert your own joke here)

 

So, an interesting meeting.

 

cheers

 

Kevin

Edited by member 17 Jul 2014 at 09:17  | Reason: Not specified

User
Posted 17 Jul 2014 at 10:29
Good news indeed Kevin. Well done. Bet the bottle of wine went down well. Sandra
We can't control the winds - but we can adjust our sails
User
Posted 17 Jul 2014 at 10:40
Hi Kevin

Wow what a result, long may it continue, it's stories like yours that gives us all a boost.

All the best

Roy

 
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