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Ending of ADT

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User
Posted 21 May 2024 at 12:48

Hi,

This is my first post here. I was diagnosed in Oct 22, with PSA 38.9, a surprise as I had no symptoms and found out via a test I bought online, then confirmed by proper lab tests :-)

As It was T3A I was strongly pushed to RT/HT treatment and began on a course of pre-Goserelin tablets on 24/11/22 then my first injection on 6/12/22 - firstly 3.6mg then on 3/1/23 a 10.8mg and so on since. I had 20 days RT in March/April 23. Blood tests showed undetectable PSA in Oct 23 and May 24.  Clearly this is going well, but I am suffering from fatigue to the degree that work is near impossible. I exercise, nearly 3000cal per day according to Fitbit. I also suffer from mood swings that are damaging my relationship (which was only 2 years old at diagnosis, I was widowed some years ago) and of course lack of libido. My sleep is poor due to night sweats. 

I'm posting as I've just spoken to the nurse who gave me my latest Goserelin 10.8mg injection today. By my reckoning I need another in August, and perhaps a 3.6mg shot in November to get me to 2 years since my first injection. My notes from the Royal Marsden say "ADT started Nov 22 for two years". However the nurse said I would normally get another 10.8mg shot in November.

I know for some this will look like I got out of jail free, but the thought of enduring ADT for more time than I need is, right now, a depressing one. I know it can take as long as the treatment lasts to recover my health, and until it does I can only do very limited professional work, and I doubt my relationship will survive it.

What are other people's experiences of this? Do I need to keep going with a 10.8mg shot in November? Is there any evidence it improves my life expectancy?  Should I call a halt to it at that time, and will this impact subsequent NHS treatment? Any advice or thoughts would be welcome. I have no access to an oncologist as was signed off by Royal Marsden last summer.

 

Many thanks in advance for help, words and support.

 

 

User
Posted 21 May 2024 at 14:06

I can sympathise, and if choosing the radiation route, I was recommended 2 years of ADT also. That alone almost put me off RT altogether and pushed me towards RP instead. Instead, I approached a German clinic who could offer SBRT with little or no ADT. I may now be starting Zoladex this week, but 6 months is about my limit, I don't think I could cope with 2 years of it. Thankfully, my stage is T2, if T3 like yours then I would probably have to stick it out. My PSA is near to what yours was though, 34.6.

User
Posted 21 May 2024 at 15:37

Originally Posted by: Online Community Member

Is there any evidence it improves my life expectancy?  Should I call a halt to it at that time, and will this impact subsequent NHS treatment?

I've seen links to scientific papers posted here by other members. Unfortunately, I can't seem to find them. But from memory it seems that there are deminishing returns from hormone therapy treatment after 18 months, so extending it for longer has very little benefit in terms of life expectancy. 

You're about a year ahead of me treatment wise and we've a similar diagnosis. If my PSA results are as good as yours I'll be doing 18 months on it and no more.

I can't imagine that declining (or reducing) one NHS treatment would preclude a patient from further NHS treatment, if and when needed.

User
Posted 21 May 2024 at 17:27

Hi Peter,

I sympathise with you on this. I had my last ever🤞🤞🤞Prostap injection on 4th April and can’t wait until Independence Day on 4th July. I will have been on it 2 years and that’s one year too long for me although it has done its job and I am now undetectable PSA from 36 at diagnosis T3B. the worst of my suede effects kicked in after a year which is why I say that. I am finishing a year early(should have been 3😩)  with the consent of my Oncologist because the side effects have had a severe impact on my QOL this past year. I spoke to my CNS about this and she then got in touch with my Onco who was happy for me to stop. I wouldn’t stop without their approval however but it’s worth speaking to them to see if they are happy to stop.

The reasearch seems to suggest that 18 months on RT is sufficient in most cases and going beyond this seems to increase recovery recovery time significantly. I’m not sure whether that is 18 months since start or 18 months since finishing RT. I was on it for 9 month before RT and it will be 15 months Post RT. I’m counting down the days!

The thing is if you stop ADT too early and find that your PSA starts to rise again it’s likely you’ll be on ADT for life! That’s way I say it’s better to get agreement with your medical team.

As soon as I started taking this drug I got severe anxiety and got prescribed Sertraline which has kept me on an even keel. I don’t have mood swings in fact I’m pretty upbeat despite the side effects Ive suffered…anxiety, joint pain and weakness, flushes, clumsiness, forgetfulness, Peyronie’s disease, insomnia, and so it goes on. I now get fatigue but it’s bearable. I also found that joining Maggies helped so much with my mental state so it might be worth considering that.

I’m wondering maybe whether you are trying to do too much? I find that I don’t have nearly as much energy and if I overdo things one day, I am wiped out the next day. I go to the gym, walk, swim and go out on my ebike as exercise…I love my ebike as it makes me feel good😊. I’ve been given specific exercises from my physio to help with my hip problems and they are helping. resistance bands I find are very good as well.

I wish you luck and hope you can get some help with your side effects.

Derek

Edited by member 21 May 2024 at 17:27  | Reason: Not specified

User
Posted 22 May 2024 at 00:40

I was told I'd be on HT for 18-36 months at the outset. Our diagnosis are similar, although you are the next grade group up from me.

I asked again as I was coming up to 18 months, and because my PSA had been undetectable since the RT, I was told I could stop anytime I liked. If my PSA had been nearer to 1, my oncologist would want me to do the full 36 months.

I was not having any problems on HT which I couldn't put up with for a bit longer for the sake of perhaps 1% improvement in cure rate. (I don't know what the actual percentage is, but I imagined it at around that level.) So I decided to go for another 10.8mg injection after the current one expired, which would take me to 22 months, and then I stopped. It's a gamble - stopping too soon could cause a return to HT for life (although there's a chance of that happening however long you're on HT).

User
Posted 22 May 2024 at 17:12

My experience was similar to Andy's. locally advanced G9 with 3 lymph gland mets treated with RT/HT and psa dropping to undetectable within a very short space of time and staying there for the 21 months I stayed on Zoladex. The 21 months was taken from the end of the RT, though I did have an extra couple of months before RT.

The survival stats after 18 months are not significantly different and I have to wonder, if someone does get recurrence, whether that would indicate that the initial treatment had not been successful, rather than that 18 months v 3 years had not been long enough.

Jules

User
Posted 23 May 2024 at 11:42

Hi Peter,

Like you, I was without symptoms when a routine PSA test showed a big rise and after a biopsy, I was diagnosed with T4 PC with a Gleason score of 9. My father and brother both died from the disease so I was considered high-risk and I was put on HT straight away, first Bicalutamide and then Zoladex 10.8. Chemo and RT followed and I am now 28 months into HT with another 8 months scheduled.

Again, like you, I have found the side effects of Zoladex difficult to endure. I have all of your symptoms plus, lately, a lot of joint pain in my legs. This came on after the first 18 months or so of HT. I now use a walking stick when venturing out. I tried the usual herbal remedies and had 14 weeks of acupuncture but I had no relief from the side effects from either although others have fared better.  Recently my PSA has been rising, doubling at every test. I am due to see my oncologist later today when I will receive the results of my latest PET scans. Depending on what these scans reveal I will have to decide on where I go from here. I am secretly hoping that I can ditch the Zoladex early.

So, that's my experience. I take comfort from others' experiences on this site who have gone through this treatment and come out the other side, as it were, knowing that the side effects diminish once the HT is stopped. I hope that you find some relief soon. Best wishes.

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User
Posted 21 May 2024 at 14:06

I can sympathise, and if choosing the radiation route, I was recommended 2 years of ADT also. That alone almost put me off RT altogether and pushed me towards RP instead. Instead, I approached a German clinic who could offer SBRT with little or no ADT. I may now be starting Zoladex this week, but 6 months is about my limit, I don't think I could cope with 2 years of it. Thankfully, my stage is T2, if T3 like yours then I would probably have to stick it out. My PSA is near to what yours was though, 34.6.

User
Posted 21 May 2024 at 15:37

Originally Posted by: Online Community Member

Is there any evidence it improves my life expectancy?  Should I call a halt to it at that time, and will this impact subsequent NHS treatment?

I've seen links to scientific papers posted here by other members. Unfortunately, I can't seem to find them. But from memory it seems that there are deminishing returns from hormone therapy treatment after 18 months, so extending it for longer has very little benefit in terms of life expectancy. 

You're about a year ahead of me treatment wise and we've a similar diagnosis. If my PSA results are as good as yours I'll be doing 18 months on it and no more.

I can't imagine that declining (or reducing) one NHS treatment would preclude a patient from further NHS treatment, if and when needed.

User
Posted 21 May 2024 at 17:27

Hi Peter,

I sympathise with you on this. I had my last ever🤞🤞🤞Prostap injection on 4th April and can’t wait until Independence Day on 4th July. I will have been on it 2 years and that’s one year too long for me although it has done its job and I am now undetectable PSA from 36 at diagnosis T3B. the worst of my suede effects kicked in after a year which is why I say that. I am finishing a year early(should have been 3😩)  with the consent of my Oncologist because the side effects have had a severe impact on my QOL this past year. I spoke to my CNS about this and she then got in touch with my Onco who was happy for me to stop. I wouldn’t stop without their approval however but it’s worth speaking to them to see if they are happy to stop.

The reasearch seems to suggest that 18 months on RT is sufficient in most cases and going beyond this seems to increase recovery recovery time significantly. I’m not sure whether that is 18 months since start or 18 months since finishing RT. I was on it for 9 month before RT and it will be 15 months Post RT. I’m counting down the days!

The thing is if you stop ADT too early and find that your PSA starts to rise again it’s likely you’ll be on ADT for life! That’s way I say it’s better to get agreement with your medical team.

As soon as I started taking this drug I got severe anxiety and got prescribed Sertraline which has kept me on an even keel. I don’t have mood swings in fact I’m pretty upbeat despite the side effects Ive suffered…anxiety, joint pain and weakness, flushes, clumsiness, forgetfulness, Peyronie’s disease, insomnia, and so it goes on. I now get fatigue but it’s bearable. I also found that joining Maggies helped so much with my mental state so it might be worth considering that.

I’m wondering maybe whether you are trying to do too much? I find that I don’t have nearly as much energy and if I overdo things one day, I am wiped out the next day. I go to the gym, walk, swim and go out on my ebike as exercise…I love my ebike as it makes me feel good😊. I’ve been given specific exercises from my physio to help with my hip problems and they are helping. resistance bands I find are very good as well.

I wish you luck and hope you can get some help with your side effects.

Derek

Edited by member 21 May 2024 at 17:27  | Reason: Not specified

User
Posted 22 May 2024 at 00:40

I was told I'd be on HT for 18-36 months at the outset. Our diagnosis are similar, although you are the next grade group up from me.

I asked again as I was coming up to 18 months, and because my PSA had been undetectable since the RT, I was told I could stop anytime I liked. If my PSA had been nearer to 1, my oncologist would want me to do the full 36 months.

I was not having any problems on HT which I couldn't put up with for a bit longer for the sake of perhaps 1% improvement in cure rate. (I don't know what the actual percentage is, but I imagined it at around that level.) So I decided to go for another 10.8mg injection after the current one expired, which would take me to 22 months, and then I stopped. It's a gamble - stopping too soon could cause a return to HT for life (although there's a chance of that happening however long you're on HT).

User
Posted 22 May 2024 at 13:02

Many thanks all for sharing your thoughts. I too have found some research which suggests that in cases such as mine, 18 months of ADT is optimal, 

https://ascopubs.org/doi/10.1200/JCO.2017.35.15_suppl.5008

I'm going to take your advise and seek, somehow, to get hold of an oncologist later in the year (having just had a 10.8mg injection there's no point just yet), and ask them to talk me through their perception of the risk I'm taking were I to call a halt to ADT. I do sense that there is a tendency to cautiously over-treat cancer, and I understand it, but I'm not going to try to make myself the expert!

Any other thoughts would be very welcome.

 

 

 

 

User
Posted 22 May 2024 at 17:12

My experience was similar to Andy's. locally advanced G9 with 3 lymph gland mets treated with RT/HT and psa dropping to undetectable within a very short space of time and staying there for the 21 months I stayed on Zoladex. The 21 months was taken from the end of the RT, though I did have an extra couple of months before RT.

The survival stats after 18 months are not significantly different and I have to wonder, if someone does get recurrence, whether that would indicate that the initial treatment had not been successful, rather than that 18 months v 3 years had not been long enough.

Jules

User
Posted 23 May 2024 at 11:42

Hi Peter,

Like you, I was without symptoms when a routine PSA test showed a big rise and after a biopsy, I was diagnosed with T4 PC with a Gleason score of 9. My father and brother both died from the disease so I was considered high-risk and I was put on HT straight away, first Bicalutamide and then Zoladex 10.8. Chemo and RT followed and I am now 28 months into HT with another 8 months scheduled.

Again, like you, I have found the side effects of Zoladex difficult to endure. I have all of your symptoms plus, lately, a lot of joint pain in my legs. This came on after the first 18 months or so of HT. I now use a walking stick when venturing out. I tried the usual herbal remedies and had 14 weeks of acupuncture but I had no relief from the side effects from either although others have fared better.  Recently my PSA has been rising, doubling at every test. I am due to see my oncologist later today when I will receive the results of my latest PET scans. Depending on what these scans reveal I will have to decide on where I go from here. I am secretly hoping that I can ditch the Zoladex early.

So, that's my experience. I take comfort from others' experiences on this site who have gone through this treatment and come out the other side, as it were, knowing that the side effects diminish once the HT is stopped. I hope that you find some relief soon. Best wishes.

 
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