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Intermittent Hormone Therapy Update

User
Posted 22 September 2017 17:09:33(UTC)

Hell all

It's been 3 1/2 years since my last post which, to provide a context, I copy here;

Posted 08 April 2014 16:52:04
 
I am now 6.5 years into my PCA journey and life is being pretty good to me. I don't come on to the site very often now as most of the time PCA is very much in the background of my life and only comes to the forefront on key days like PSA tests. I sometimes feel a bit guilty at being such an infrequent visitor and poster especially when I consider how much help and support I received from the forum in the first years of my journey. 
As a brief reminder of my history I was diagnosed in late 2007 with a PSA of 14.5, G7, T2C/3A. Had a traditional open RP in 2008 but had some positive margins. By late summer 2009 PSA had crept up to 0.4 and I was refered for salvage RT. That took care of the Autumn and disappointingly PSA continued to rise slowly so that in March 2010 it had reached 0.6, still a low number, and I started an early course of Zoladex. 3 months later PSA was undetectable and I continued with Zoladex until August 2011 when I had my last implant. At my request, although my symtoms were not severe, I requested to transfer on to an intermittent hormone treatment and have been very pleased with it so far. 
My PSA has remained undetectable, <0.1, and was so today, 2.5 years on. I am of course delighted but know that If I had not pushed my consultant I would have been on Zoladex throughout this period as his view was if something is working why stop. I am not suggesting that IHT is right for everyone, nor am I thinking that PCA is behind me but I am really pleased that my body has had a rest from Zoladex and to be honest feel great. The only long term effect that I am experiencing is continuing ED issues but my trusty vacuum pump is helping in that area, I just wish I had got one sooner. 
So, whilst my journey got off to a bumpy start and was not an instant success, I do feel I am on a good treatment regime which suits me and will hopefully give me a while longer off treatment. 
So that's my story so far, I hope it has got a good long while to run. 
Jim
 
So what has changed in the last 3 1/2 years. well up until yesterday not much. I'm now 66 and in a couple of months will be 10 years on from initial diagnosis. I have had the usual ups and downs that life brings and PCA had slipped right to the back of my mind. 6 years of PSA <0.1 helped. Then yesterday I had my six monthly call with my latest results which showed a rise to 0.4, still an incredibly low number but after 6 years with no rise it came as a bit of a shock. I must admit I was pretty disappointed and my anxiety levels shot up and for the first time in ages turned to the pages of this forum for a bit of inspiration and advice. Looking back over old posts was a good reminder that this was not a new diagnosis but an inevitable stage in an IHT treatment regime and that far from being pi--ed that this return is a treatment failure should be delighted that the first holiday from Zoladex has lasted 6years. Although it doesn't feel good to be back on the treatment treadmill it does feel good to see how my decisions around IHT have worked for me.
I'm not sure who I'm writing this post to or for, I think its mainly a note to self and a kick up the backside to remind me that things are going pretty well and I've been incredibly lucky.
So what next? I have so far spoken to the senior nurse specialist who has suggested another PSA test in 3 months which I'm happy about but she has also suggested that I wait until it rises to 10 before going back on treatment which I'm not so sure about. My original plan had been to go early when it reaches 1 and off again after 3 tests of <0.1. Any thoughts
Jim
User
Posted 22 September 2017 18:46:06(UTC)

Hello Jim
Not sure who you're writing to or for?
Well I'm sure the men in your situation will find it interesting.

I'm sure you'll get a few opinions and some advice.

We can't control the winds - but we can adjust our sails
User
Posted 23 September 2017 17:11:13(UTC)

Well Jim 

welcome back, good to see that you have been doing well , this 0.4 could be a blip

you want to go back on HT at 1 CN wants you to go back at TEN 10 ,

See my profile wish I had gone back on HT at 1.7 or less 

Good luck 

 

Barry

User
Posted 23 September 2017 20:32:16(UTC)
Hello John and Barry
Thanks for your replies. Checked your profile John as you suggested, you've had a rough time of it. Based on my original thoughts and your experience I'm going to push for my threshold of 1. The hospital want to re-test in 3 months but I'm going to talk to my GP to see about an interim test at 6 weeks to try and get some sense of velocity.
Good luck to you both.
Jim
User
Posted 18 November 2017 14:40:33(UTC)

Just a quick update. I had a test at 6 weeks and psa had risen from 0.4 to 0.5. Hospital have revised their plan to start hormone therapy and I have been on casodex for a fortnight and having 3 month prostrap on Monday. 

Any thoughts on how long or how many >0.1 results before coming off again

Jim

Thanked 1 time
User
Posted 18 November 2017 15:03:09(UTC)

I'm glad you are going back on the hormones.

I cannot see any logic in denying treatment for someone in your position who has consistently rising PSA.

(except for patient-specific issues which may apply in some cases).

Leaving an awakening cancer time to grow unchecked seems a weird concept!

I regret I can't offer any helpful thoughts on when to 'come off', though I suspect the docs will advise a significant time on a PSA of (effectively) zero before even considering it.

 

Good Luck!

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 25 November 2017 10:57:45(UTC)

Thanks for your comments Andrew, they make good sense.

I had Prostrap on Monday and apart for a hard lump at the injection site no problems. The lump is shrinking and no longer obvious. The agreement with the MDT is that I can take another break from treatment after two consecutive 3 monthly PSA tests at >0.1, so if I get a quick drop as previously I'll only have two doses of Prostrap. It seems that there is an important balance to be struck between being >0.1 for long enough to keep the PC from recurring too quickly and coming off quickly enough to reduce the chances of PC becoming testosterone independent. My GP has agreed for me to get a couple of interim tests at 6 weeks to check the speed of the hoped for fall.

I'm not sure if I've got it right but it's a plan.

Jim

Thanked 1 time
User
Posted 26 November 2017 11:17:47(UTC)

It's always good to have a plan!

I trust you mean <0.1?

Good Luck!

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 20 January 2018 19:50:10(UTC)

Things have moved on a bit. I had a psa test 7 weeks after starting prostrap and was delighted that it had dropped to <0.1. Hospital has agreed that I can can have a treatment holiday as long as psa remains at this level until the start of May. So prostrap in February and then hopefully another break.
Think we'll go sailing again before they take our EHIC of us.
One comment about prostrap. This is the first time I've been on it and have been shocked by how much it has disturbed my sleep pattern. Zoladex didn't seem to have the same impact. Any advice on sleep management would be welcome.
Jim

 
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