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Coming off HT - what should we expect

User
Posted 06 Dec 2018 at 20:31

Hi all. I hope you are all well. 

OH was diagnosed in January 2017 as T3b, N1, M0 and he had chemo, RT and brachytherapy in that order. He has been on prostap since diagnosis, so 2 years in January 2019.

OH’s PSA has now been stable at 0.1 since September 2017 so very happy with that.

We now have an onco appointment coming up in early January and we are expecting him to be taken of HT completely at this point as they told us he would only be on it for 2 year.

My question is what to expect then. I would imagine that as he still has a prostate we should expect some rise in PSA but how big a rise should we expect and what would it need to get to before contacting the Onco and starting some form of active treatment again. 

He is very worried about coming off the HT as he has convinced himself that the HT is keeping the PCa at bay and he looks at any rise in PSA as a bad sign!!

Im just looking for some idea of what to expect really so any advice would be welcome So I can give him some reassurance. Thanks Debbie xx

Debbie xxx
User
Posted 06 Dec 2018 at 22:25
Hi Debbie.

No answer Iā€™m affraid but just wanted to say glad to hear that the treatment has worked so far and I will be very interested in the replies you get as I have just started my HT.

Bob

User
Posted 07 Dec 2018 at 00:07
You are in such an unusual position - it is so rare to have chemo alongside curative treatment. If he does indeed come off the HT in January, you may be told to ask for a re-referral if his PSA rises over 2.0 although they may not restart HT until it gets to 5 or 10. One man here is under a hospital tha5 does not restart HT until the PSA gets to 20.

Something for you to ask at the appointment but with an irradiated prostate, anything under 2 is considered to be a good result.

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

User
Posted 07 Dec 2018 at 09:38

Interesting point Debbie, I'm currently on Prostap and Chemo (docataxel) completed 4 rounds with 2 to go. A guy at my prostate cancer support group told me they took him off prostap after 3 years and his PSA has been relatively stable, albeit with a slight rise, since then - but he never had chemo with the HT.

I guess you need to ask what the monitoring arrangements are going forward, seems to be a big gap between intensive HT and nothing. Great news that your OH has responded so well to the treatment.

User
Posted 07 Dec 2018 at 14:45

Thank you all so much for your replies. At least now I have some questions when we see the onco. Thanks again all xxx

Debbie xxx
User
Posted 10 Jan 2020 at 17:50
Apologies for hijacking Debbie's post but this forum won't let me start new threads despite reporting it.

When my next Prostap jab is due I'll have been on HT for 18 months and would like to consider having a break.

What are others experiences of this? My Onco does not share my view that by coming off it before my body builds a resistance is a good thing because the HT is starving the metastatic cancer of testosterone.

I have read from others on here who have "HT holidays", George H in particular.

Seems logical to have a break then go back on it when the PSA rises.

Any input appreciated.

User
Posted 11 Jan 2020 at 00:20
Men that have successfully used IHT have almost all done so with the support and close monitoring of their oncologist. I absolutely get why you want to do it but 18 months is a bit too soon to be going down that road. 2-3 years of stable, low PSA would be the desired foundation for IHT. Maybe in the Autumn you could discuss it again with your specialist?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2020 at 08:18

Hi Debbie,

                   I had similar treatment to your other half.......PSA at dx was 24.6 gleason 8 3+5 scans all clear.

Onco believes that there will be micro spread so I was given chemo, 37 sessions of Radiotherapy and was on Zoladex for 30 months.....My lowest PSA when I finished HT was 0.03......6 months later, 0.05,   6 months later ( last psa ) 0.17..

As I still have a prostate I am expecting it to rise a bit more the longer I am off HT......Onco does not want to see me unless psa hits 4....I'm thinking if it goes over 2, I will go back to her....I have been off HT 15 months now and am just enjoying life....Hope this is helpful.

 

Shaun

User
Posted 13 Jan 2020 at 12:22

Tumours that are radiated will vary in size and extent, so although the prostate (and possibly just beyond) may receive the same amount of RT in total, the disposition may mean that some parts of the Prostate in one patient may receive a greater dose than in another. This can mean that some parts of the prostate are less affected and are more likely to recover so can produce a higher level of PSA. Certainly continued HT after RT can be responsible for keeping PSA low, so it is only after it is stopped and it's effect lessens over several months that it becomes more apparent how successful the RT was. Biochemical failure or reccurrence is defined as 2 plus the patients' nadir so although PSA can fluctuate you don't want it to increase beyond that point. However, as has been stated, oncologists vary at what figure they consider further treatment. IHT has only been adopted (and not by all), in comparatively recent years and I think it's long term success has yet to be fully assessed. It may be that it is more suited to some men rather than others.

Of course it is generally quicker and easier to establish how men have responded to Prostatectomy because the PSA figure should be very small, only a minute addition being contributed from elsewhere like adrenaline glands. There are rare cases where cancer has spread without a rise in PSA but in more rare forms of PCa.

Edited by member 14 Jan 2020 at 01:24  | Reason: Not specified

Barry
User
Posted 13 Jan 2020 at 17:18

Hi Jasper, good to hear from you. I agree with Lynne that I think 18 months is a little early to come off, even temporarily, especially if your onco is against the idea. He’s the expert so I’d go with his recommendation. 

To bring you up to speed, my OH’s PSA has been 0.1 since September 2017 and is still holding firm with no movement at all so all is good. The 3 monthly PSA tests are always a nervy time but so far our luck is holding so long may it last! Debbie xxx

Debbie xxx
User
Posted 13 Jan 2020 at 19:29

I asked about finishing Prostap HT at 18 months and was told in no uncertain terms no way. They like to wipe up any micro mets with the HT. 

So my 2 years is up and I’m now 3 days after my HT should start wearing off (3 months after last injection).

Hoping I get my testosterone back soon. Next PSA & testosterone check in March...will be a bit nervous at that point I think....

Phil

User
Posted 13 Jan 2020 at 20:17
It's interesting how different oncologists have different views on how long HT should go on for. I was initially supposed to be on HT for two years, but I asked my oncologist if I could stop at 18 months and he readily agreed, saying that the latest research showed that 18 months was just as effective as two years. So I'll be taking my final bicalutimide tablet on 16th Feb. Only another 34 days to go šŸ˜.
User
Posted 15 Jan 2020 at 17:02

I’m now up to a whole 5 days from when my Prostap HT should be starting to wear off. The last 2 days I’ve been really emotional and teary. I know I’ve had emotional issues throughout my HT but I wasn’t expecting the intensity while the HT is meant to be leaving my system....

Any comments on how long this might last ?

I did get the depression etc pretty quick after starting the HT.

Apologies to Debbie to hijack the thread but thought it might be useful for anyone coming off.

Thanks

Phil

 
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