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Intermittent Hormone Treatment

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User
Posted 29 Aug 2016 at 22:35

Hi everyone

OH diagnosed in June this year. PSA 205. Gleason 9 and spread to bones.

First Oncologist appointment was on 12th August. We already knew the diagnosis and all the scores on the doors, and then the Oncologist told us exactly as it was. No holding back. He gave us the average estimate for how long hormone treatment generally works on someone with aggressive disease, and then gave us the estimates with early chemo added on top of this.  

I knew all this already but I came away absolutely devastated. I felt as bad as when OH was first diagnosed. We were starting to cope with the diagnosis after the initial shock.The PSA, then the bone scan and biopsy results were given to us bit by bit. Don't know what I expected really, but a bit of positivity from the Oncologist would have been nice - but there you go.

One of the things I asked the Oncologist about was intermittent hormone therapy as a possibility later on. Maybe a break from side effects of the meds, and I'd also heard that sometimes if hormone therapy stops working, a break may cause a reverse effect for a time. The onco said to me that this was only done to save costs and there was no benefit to it. I think he meant private patients and patients who live abroad, but he could have been talking about nhs patients too. He also said the Prostap injection OH had been given was cheaper and not as good as some other hormone meds and he prescribed Bicalutamide on top to get the testosterone down to castrate level. Hubby had had a blood test a few days before the appt and testosterone was 0.9. I didn't think this was bad considering he had not been on meds for long. Also PSA was down to 2.7 so I was quite surprised.

Does anyone have any experience with intermittent hormone therapy working? or could it be a cost issue with no real benefit? Is Prostap cheaper and less effective than other hormone meds? I had heard guidelines had recently changed and Prostap was used now instead of Zoladex. Am unsure if onco would have preferred Zoladex or another hormone injection but I just find it hard to believe that these things are decided solely on the price alone.

Any thoughts on this would be appreciated

Ruth

 

User
Posted 30 Aug 2016 at 01:36

Hi,
I think maybe you just asked about IHT too early for the oncologist's comfort. IHT is definitely not a cost-cutting exercise - I can't think of anyone on here that has had an HT holiday at the suggestion of their doctor - it is almost always at the request of the patient, and generally speaking the doctors can feel very anxious about it. However, you are running before you can walk - your OH would need to have been on hT for a couple of years at least, be down below castrate-level and holding, and to have got his PSA consistently low and stable before you could even think about it.

There was a bit of a national outcry a couple of years ago about the NHS decision that oncos should prescribe Prostap rather than Zoladex - and sadly yes, the NHS has been very open that it is about cost. Some CCGs have gone with it, others have given doctors in their area the permission to prescribe what they think is best for the patient. Surprised your onco told you though - I can't see how that would help a patient to feel positive about his treatment path :-(

So, having mentioned the benefit of early chemo to you, has he offered it?

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

User
Posted 30 Aug 2016 at 20:56

i am on iht now started on the 4th july after 2yrs on zoladex,it was my oncos idea to come off ht,psa was 65 gleason 7 3+4,psa 0.010 when starting holiday,i will probably never recover before i am back on with being high risk t3b no mo,most people put on weight with ht,i dont i lose weight what with bone loss etc.

User
Posted 30 Aug 2016 at 22:07

Hi Ruth
I've been on Prostap plus Enzalutamide for 20 months.
I was diagnosed Dec2014 and started medication Jan 2015 by which time my psa was 235.
Over the last year or so my psa has held at around .03 to .06
I'm hoping for a possible IHT from next year.
I've only had a few side effects from the Prostap

I believe Enzalutamide is also now offered up front with Prostap (I'm still on the Stampede Trial of it) as an alternative to early Chemo.
I have absolutely no idea which is best.

I trust everything will go well with your OH's treatment

Paul

User
Posted 01 Sep 2016 at 00:23

Hi Ruth,

George_H still posts on here occasionally, I know he has survived many years on IHT and is an advocate of the intermittent approach, there is a lot to be said for it, he is very well researched and approachable.  You could send him a private message on this PCUK website, or visit his 'Bollocks to Prostate cancer' website, search B2PCa 

:)

Dave 

User
Posted 01 Sep 2016 at 09:13

regarding what lynn said that it is nearly always the patient that asks to come off ht,not in my case it was my oncologist that suggested it,after been on ht for 2yrs.

User
Posted 04 Sep 2016 at 21:19

tony 's oncologist takes him off ht when his psa gets to below 1, he is gleason 9 and t3b diagnose april 2006. onco does this because he says ht will only work for so long and having the breaks from it prolongs how long it will work. eg if it would work for tony for 5 years and he is on it for 2 , has a years break then is on it for 1 year and so on it would still work for the 5 years he is actuallly having it and not just 5 years. as you can see from the dates its over 10 years and he is still going strong. he goes to the gymn 3 times a week and golf twice a week.

regards barbara

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User
Posted 30 Aug 2016 at 01:36

Hi,
I think maybe you just asked about IHT too early for the oncologist's comfort. IHT is definitely not a cost-cutting exercise - I can't think of anyone on here that has had an HT holiday at the suggestion of their doctor - it is almost always at the request of the patient, and generally speaking the doctors can feel very anxious about it. However, you are running before you can walk - your OH would need to have been on hT for a couple of years at least, be down below castrate-level and holding, and to have got his PSA consistently low and stable before you could even think about it.

There was a bit of a national outcry a couple of years ago about the NHS decision that oncos should prescribe Prostap rather than Zoladex - and sadly yes, the NHS has been very open that it is about cost. Some CCGs have gone with it, others have given doctors in their area the permission to prescribe what they think is best for the patient. Surprised your onco told you though - I can't see how that would help a patient to feel positive about his treatment path :-(

So, having mentioned the benefit of early chemo to you, has he offered it?

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

User
Posted 30 Aug 2016 at 01:59

Hi Ruth,

To be diagnosed with early PCa is bad enough but for OH to be diagnosed with it at a more advanced stage must make it even more devastating. As regards IHT, we do have some members who are on such a regime and no doubt will give their views on this. The known advantage is that it gives patients the opportunity of holidays from the HT drugs and associated side effects for varying degrees of time. By how long, if by any time it extends the effectiveness of HT has not been quantified and may well depend on the type of cancer a particular man has and the way it develops to counteract the lack of normally produced testosterone. Those on IHT seem to agree with their consultants a level for restarting HT which may differ from one man to another. (Commencing HT can reduce PSA dramatically in a relatively short time and particularly early on but eventually the cancer finds ways round it. Oncologists like testosterone to fall to 0.69 ng/dL castrate level but getting down to this level can be difficult and is not always achievable).

Edited by member 30 Aug 2016 at 02:04  | Reason: Not specified

Barry
User
Posted 30 Aug 2016 at 20:50

Hi and thanks for your replies

Yes Lyn. OH starts chemo on 8th Sept. He had a pre -assessment yesterday. Am a bit worried how he will react to the chemo but we will soon find out.

Re OH being on Prostap instead of Zoladex - I'm assuming our doctor hasn't been given permission to give what he thinks best. OH was started on Prostap straight after his biopsy in June. He didn't have a doctor appt untl August so I would think that the MDT had already made the decision as it was the nurse/keyworker who actually gave us the prescription for the Bicalutamide and then injected Prostap a few weeks later. I certainly didn't feel positive about treatment when the onco prescribed Bicalutamide as a top up.

User
Posted 30 Aug 2016 at 20:56

i am on iht now started on the 4th july after 2yrs on zoladex,it was my oncos idea to come off ht,psa was 65 gleason 7 3+4,psa 0.010 when starting holiday,i will probably never recover before i am back on with being high risk t3b no mo,most people put on weight with ht,i dont i lose weight what with bone loss etc.

User
Posted 30 Aug 2016 at 22:07

Hi Ruth
I've been on Prostap plus Enzalutamide for 20 months.
I was diagnosed Dec2014 and started medication Jan 2015 by which time my psa was 235.
Over the last year or so my psa has held at around .03 to .06
I'm hoping for a possible IHT from next year.
I've only had a few side effects from the Prostap

I believe Enzalutamide is also now offered up front with Prostap (I'm still on the Stampede Trial of it) as an alternative to early Chemo.
I have absolutely no idea which is best.

I trust everything will go well with your OH's treatment

Paul

User
Posted 01 Sep 2016 at 00:23

Hi Ruth,

George_H still posts on here occasionally, I know he has survived many years on IHT and is an advocate of the intermittent approach, there is a lot to be said for it, he is very well researched and approachable.  You could send him a private message on this PCUK website, or visit his 'Bollocks to Prostate cancer' website, search B2PCa 

:)

Dave 

User
Posted 01 Sep 2016 at 09:13

regarding what lynn said that it is nearly always the patient that asks to come off ht,not in my case it was my oncologist that suggested it,after been on ht for 2yrs.

User
Posted 01 Sep 2016 at 11:27

Hi Dave. I will do that

Thanks

Ruth

User
Posted 04 Sep 2016 at 21:19

tony 's oncologist takes him off ht when his psa gets to below 1, he is gleason 9 and t3b diagnose april 2006. onco does this because he says ht will only work for so long and having the breaks from it prolongs how long it will work. eg if it would work for tony for 5 years and he is on it for 2 , has a years break then is on it for 1 year and so on it would still work for the 5 years he is actuallly having it and not just 5 years. as you can see from the dates its over 10 years and he is still going strong. he goes to the gymn 3 times a week and golf twice a week.

regards barbara

 
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