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Are side effects worse with SRT?

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User
Posted 08 Nov 2023 at 11:59

Hi all,

In general, are the side effects of salvage RT (and accompanying HT) about the same as if you’re having it as a first line of treatment?

Thanks,

Nick

User
Posted 08 Nov 2023 at 13:23

H8 Nick,

Can’t answer that as it was RT, not SRT I had. All I can say is the side effects from HT for me were far worse than RT? In fact RT was a breeze for me so far. I say this as I’m always wary that they might creep up on me, it’s 6 months since finishing and the only noticeable side effects for me have been VERY load farting! But HT side effects have been bad. I’m on holiday ATM and just been at the supermarket where I had a hot flush, but I can live with that as they are not as severe as they were. But for me by far the worst is the joint ache and stiffness which so far I have not found a solution too. We were out for a walk last night in beautiful Corralejo but walking up the Main Street I thought I wasn’t going to make it to the car, and when I did reach it I burst into tears as it really gets to me(another side effect😢😢😢)

Some men don’t seem to have any side effects from HT but for me it’s been torture and if it was me in your position and I had the option of SRT without the HT, I would go for it. I guess it depends on what your Onco says gives you the best chance.

All the best whatever you decide.

Derek

User
Posted 08 Nov 2023 at 14:19

Hi Nick I had 37 session's off radiotherapy and hormone therapy for 18 months unlike decho I found both tolerable not sure if different types off hormone therapy have different side effects I was on decapeptyl not sure what decho is on but it sounds like it's having a a rough time bless him not sure if you can change hormone treatment but might be a question to ask 

User
Posted 08 Nov 2023 at 17:48

Nick, I had 6 months Bicalutimide with my SRT and found the HT side effects tolerable. There was some fatigue, slight depression, on and off but thankfully no hot flushes. I also ended up with sore swollen nipples after about a couple of months. That can be countered by taking Tamoxifen. It eventually righted itself about five to six months after finishing Bical.

On the other hand SRT did cause quite severe bladder and bowel urgency which gradually got better. Also, like Derek, a lot of flatulence.

It's difficult to really say whether which is worse for side effects (RT/HT or SRT/RT) because there are too many variables. However 6 months RT vs 3 years RT is a no brained.

User
Posted 08 Nov 2023 at 18:51

Sertraline is an anti-depressant. I am on 50mg and for me it’s been a lifesaver. When I started HT the first side-effect was massive anxiety, I could hardly get out of bed and when I did I was like a zombie! I was coping when diagnosed but the Prostap3 just turned me into a walking wreck. I knew that other people on here had taken it an dmy sister in law also takes it and it’s made huge difference for her too. I have mentioned it to others through Maggies and here. I would never normally recommend anti-depressants to anyone but we go through so much battling this disease, so if you’re struggling why not get a little help? It takes a few weeks to kick in but when it did I felt so much better and able to deal with all hurdles I’ve had to jump over on this ‘journey’.

User
Posted 08 Nov 2023 at 22:12

GP was happy to prescribe it for me.

If you are struggling Nick, please go and get some help. As I said the sertraline helped enormously but what really made me come to terms with my PCa was joining Maggies and being able to talk openly about my feelings as well as getting all the practical support from others in the same boat as me. I’ve made so many good friends there…it’s sometimes easier to talk to them rather than family, they are all so understanding and supportive.

Take care,

Derek

User
Posted 12 Nov 2023 at 15:18

Get a beer belly. That would solve that particular problem! 

User
Posted 12 Nov 2023 at 19:46

I think that it can takes a huge amount of physical and mental energy when coping with cancer. Because its ongoing it really can be sapping. Taking Sertraline helped me when I was first diagnosed and facing treatment as I felt so vulnerable. Talking with with friends and family also helped a lot.

 

User
Posted 13 Nov 2023 at 13:03
If you read this thread through, I think you will find that the side effects of treatment in general and HT in particular are at far greater variance between individuals so it makes it difficult to know which wil impact an individual to a greater degree.

Incidentally, my wife is on Sertraline for anxiety (she has Dementia), and her tablets were raised recently from 50 to 100mg but seems to have made no difference at all. Another example of the different way individuals react to drugs.

Barry
User
Posted 23 Nov 2023 at 17:48

Can’t answer that Nick I’m afraid but good luck for tomorrow🤞

User
Posted 23 Nov 2023 at 21:59

Hi Nick

Ref. The Sertraline part of this discussion, I can thoroughly recommend it. I was becoming depressed and stressed following the third (my own) cancer diagnosis in my family this year, so went to the GP. She prescribed it without hesitation. I am 2 weeks into taking 50mg and it is starting to make a real difference.

Ian.

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User
Posted 08 Nov 2023 at 13:23

H8 Nick,

Can’t answer that as it was RT, not SRT I had. All I can say is the side effects from HT for me were far worse than RT? In fact RT was a breeze for me so far. I say this as I’m always wary that they might creep up on me, it’s 6 months since finishing and the only noticeable side effects for me have been VERY load farting! But HT side effects have been bad. I’m on holiday ATM and just been at the supermarket where I had a hot flush, but I can live with that as they are not as severe as they were. But for me by far the worst is the joint ache and stiffness which so far I have not found a solution too. We were out for a walk last night in beautiful Corralejo but walking up the Main Street I thought I wasn’t going to make it to the car, and when I did reach it I burst into tears as it really gets to me(another side effect😢😢😢)

Some men don’t seem to have any side effects from HT but for me it’s been torture and if it was me in your position and I had the option of SRT without the HT, I would go for it. I guess it depends on what your Onco says gives you the best chance.

All the best whatever you decide.

Derek

User
Posted 08 Nov 2023 at 14:19

Hi Nick I had 37 session's off radiotherapy and hormone therapy for 18 months unlike decho I found both tolerable not sure if different types off hormone therapy have different side effects I was on decapeptyl not sure what decho is on but it sounds like it's having a a rough time bless him not sure if you can change hormone treatment but might be a question to ask 

User
Posted 08 Nov 2023 at 16:51

I am on Prostap3 for 3 years and my CNS says it’s one of the kindest with relation to side effects😱 I could tolerate HT for 18 months, which would be 2 months to go and I would be counting down the hours, knowing that the end was in sight but I’m only half way there. I just live in hope that the joint issues don’t get any worse otherwise I will need a wheelchair to get me on a plane out to our place in Fuerteventura!🤣🤣🤣

I have been SO proactive about my PCa and treatment but this one’s got to me, but a few things still to try…I will NOT give up on this…

Short Course of Ibuprofen which I will be starting tomorrow.
Daily Swimming…I started it out here but went down with a cold so lying low for the moment.
Im going to see my acupuncturist when I get back to the UK and have needles stuck in me.
I’m  going to go private and see a professor of Urology to see if he has any suggestions.

This is on top of my exercise regime of walking, cycling and gym….someone even suggested I was doing too much but I’ve tried cutting back and it doesn’t help at all.

I sometimes feel that those of us on HT/RT are abandoned after their RT  ends which is disappointing because it’s FAR from the end of their treatment and I get the impression you just have to ‘suck it up’ if you’re side effects are seriously affecting your QOL. Without the support of my family and friends, Maggies, the members of PCUK and the little happy pill(sertraline😊) I would be a total wreck!

User
Posted 08 Nov 2023 at 17:33
Hi Nick,

yes, the side effects are more or less the same regardless of whether you are having RT / HT as a primary treatment or as adjuvant or salvage treatment

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

User
Posted 08 Nov 2023 at 17:48

Nick, I had 6 months Bicalutimide with my SRT and found the HT side effects tolerable. There was some fatigue, slight depression, on and off but thankfully no hot flushes. I also ended up with sore swollen nipples after about a couple of months. That can be countered by taking Tamoxifen. It eventually righted itself about five to six months after finishing Bical.

On the other hand SRT did cause quite severe bladder and bowel urgency which gradually got better. Also, like Derek, a lot of flatulence.

It's difficult to really say whether which is worse for side effects (RT/HT or SRT/RT) because there are too many variables. However 6 months RT vs 3 years RT is a no brained.

User
Posted 08 Nov 2023 at 17:52

Thanks all,

I think I’ll be on decapeptyl and bicalutimide plus six weeks of RT. (3 months of HT then the RT then 2-3 years more HT. )

I guess I’m trying to look into a crystal ball to work out what might happen in 6 months, a year, 2 years. Not possible, I know!! But I was just interested to hear different experiences to see if there’s any kind of pattern. 

Lyn, thank you. That’s very reassuring to know. It means I can take on board all the advice on the PCUK site at face value. 

Derek - so sorry to hear you’re up against it with the joint pain as well as everything else. Sounds very tough but I’m really impressed by the array of activities, drugs, conversations you’re having to keep it all at bay. 

One other question - I’ve seen a few people mention sertraline. What does it do for you?

Thanks again

Nick 

 

User
Posted 08 Nov 2023 at 18:51

Sertraline is an anti-depressant. I am on 50mg and for me it’s been a lifesaver. When I started HT the first side-effect was massive anxiety, I could hardly get out of bed and when I did I was like a zombie! I was coping when diagnosed but the Prostap3 just turned me into a walking wreck. I knew that other people on here had taken it an dmy sister in law also takes it and it’s made huge difference for her too. I have mentioned it to others through Maggies and here. I would never normally recommend anti-depressants to anyone but we go through so much battling this disease, so if you’re struggling why not get a little help? It takes a few weeks to kick in but when it did I felt so much better and able to deal with all hurdles I’ve had to jump over on this ‘journey’.

User
Posted 08 Nov 2023 at 20:03

Thanks Derek. Did your GP prescribe it or someone at the hospital?

User
Posted 08 Nov 2023 at 22:12

GP was happy to prescribe it for me.

If you are struggling Nick, please go and get some help. As I said the sertraline helped enormously but what really made me come to terms with my PCa was joining Maggies and being able to talk openly about my feelings as well as getting all the practical support from others in the same boat as me. I’ve made so many good friends there…it’s sometimes easier to talk to them rather than family, they are all so understanding and supportive.

Take care,

Derek

User
Posted 09 Nov 2023 at 14:05

Thanks Derek, I’ll be going to my local support group at the end of the month for the first time. I think I’m looking forward to it!

I’ll talk to the medics about sertraline. I’ve always been against taking ant depressants but having tried everything else, it might be worth a go.

Chris, ref the increased flatulence, my wife says she won’t know the difference! 😂

Nick

User
Posted 09 Nov 2023 at 15:35

Hi Nick,

if your support group is anything like mine(and they are not all like that unfortunately from what others have) you will look forward to going to it EVERY time and come out feeling much better than you went in.

Like you I’m against taking antidepressants but I don’t care, the anxiety has not been brought on by myself or anything I’ve done but the drugs, so as long as I need them I am staying on them.  I think you’d be quite surprised at the number of people on sertraline…it really does help😊

It’s not so much the increase in flatulence but the volume….OMG it can be loud!😱🤣🤣🤣

Derek

User
Posted 09 Nov 2023 at 20:10
Just a quick comment, I was on Zoladex for 3 yrs (together with abiraterone and enzalutimide on trial). One of the effects I had was depression, I would just start crying for no reason whilst I was out for a walk, driving, windsurfing, showering etc etc i.e. for ' no reason'. I sort of expected it as it was a known side effect so went to see gp, was prescribed fluoxitine (prozac) by gp, no problem and I had no problem seeking help and it helped greatly, once it got into my system.

Peter

User
Posted 10 Nov 2023 at 09:15

Thanks Derek and Peter, I’ll see what they say about the anti depressants. 

As for the high volume farting, Mrs Nick is really looking forward to that! 

User
Posted 10 Nov 2023 at 12:47
Don't understand what causes the increased flatulence after RT, probably a good job I don't go to Church anymore 😂.

Went for my routine blood test this morning, the nurses at Fleetwood drop in centre are a lovely bunch.

The nurse said your arm is very warm, have you got in built central heating, I replied yes it's called Prostap.

User
Posted 10 Nov 2023 at 14:00

Originally Posted by: Online Community Member
Don't understand what causes the increased flatulence after RT, probably a good job I don't go to Church anymore 😂.
Went for my routine blood test this morning, the nurses at Fleetwood drop in centre are a lovely bunch.
The nurse said your arm is very warm, have you got in built central heating, I replied yes it's called Prostap.

Like it🤣🤣🤣🤣 sometimes you just have to laugh!

Cold outside, warm inside….BANG! Happens every time!
Oh and the other way round as well🤣🤣🤣

User
Posted 12 Nov 2023 at 12:25

Hi Nick,

In my experience, the side effects of HT - in my case Zoladex - are worse than any side effects I had with six cycles of chemo and 37 fractions of RT. The side effects of the chemo and RT were minor after six months but not so the HT. I have been on Zoladex for 23 months with another 13 to go. From what I have read on other threads on this forum the HT side effects lessen considerably after the HT stops although this can take several months. Good luck with your treatment.

User
Posted 12 Nov 2023 at 12:46

Originally Posted by: Online Community Member
I would just start crying for no reason whilst I was out for a walk, driving, windsurfing, showering etc etc i.e. for ' no reason'. 
Peter

I cry when I'm showering.

I hate looking down on the unemployed. 😉

 

Adrian.

User
Posted 12 Nov 2023 at 15:18

Get a beer belly. That would solve that particular problem! 

User
Posted 12 Nov 2023 at 19:46

I think that it can takes a huge amount of physical and mental energy when coping with cancer. Because its ongoing it really can be sapping. Taking Sertraline helped me when I was first diagnosed and facing treatment as I felt so vulnerable. Talking with with friends and family also helped a lot.

 

User
Posted 12 Nov 2023 at 20:33

It certainly takes a huge amount of physical and mental energy dealing with HT. I would say far worse than the diagnosis itself.

User
Posted 13 Nov 2023 at 13:03
If you read this thread through, I think you will find that the side effects of treatment in general and HT in particular are at far greater variance between individuals so it makes it difficult to know which wil impact an individual to a greater degree.

Incidentally, my wife is on Sertraline for anxiety (she has Dementia), and her tablets were raised recently from 50 to 100mg but seems to have made no difference at all. Another example of the different way individuals react to drugs.

Barry
User
Posted 13 Nov 2023 at 16:57

Obviously it's good to do what you are told with the hormone therapy but my hospital said I could stop it after 18 months as there is not much to be gained after that period was originally on for 3 years has anyone else had the same information I have read on here similar stories can anyone enlighten me if they have heard the same I ask why put someone on for 3 years if this is the case  thanks gaz 👍

User
Posted 13 Nov 2023 at 17:05

I will have been on it for 18 months come my next injection in January and will be asking that question Gaz. The only thing is that it’s only been 9 months since RT finished whereas after 18 months most people will have been on it for at least 12 months post RT. I’m not sure whether that makes a difference or not. I really don’t know whether my knees can tolerate 3 years and am concerned that they will NEVER recover😟

User
Posted 13 Nov 2023 at 18:21

Worth asking the question decho as you are obviously struggling with the hormone therapy it didn't effect me too bad had my last hospital appointment before being passed back to my GP when she suggested that going behond 18 months wasn't going to benefit me I started my ht in December 3 months before I started my 37 session's off radiotherapy if that helps . Anyone else had similar advice  gaz 👍

Edited by member 13 Nov 2023 at 18:21  | Reason: Not specified

User
Posted 23 Nov 2023 at 17:43

I have my third PSMA PET scan tomorrow. With the CT, MRI and bone scans I’ve had, does anyone know when the amount of radiation becomes glow-in-the-dark problematic?

User
Posted 23 Nov 2023 at 17:48

Can’t answer that Nick I’m afraid but good luck for tomorrow🤞

User
Posted 23 Nov 2023 at 18:23

PSMA PET scan is equivalent to about 4 years background radiation. (Most other types of PET scan are more.)

No radiation from MRI scans (it's a magnetic field, not an ionising field).

CT scan depends which part of the body. Abdomen/pelvis without contrast is equivalent to about 2.5 years background radiation, or double that if done with and without contrast.

Technetium-99m nuclear bone scan is equivalent to about 2 years background radiation.

Chest X-ray is equivalent to about 0.1 years background radiation.

Each time you are offered a scan, the associated risks have been considered and the scan was only offered if the benefits outweigh the risks.

Edited by member 23 Nov 2023 at 18:42  | Reason: Not specified

User
Posted 23 Nov 2023 at 19:48

Thanks Andy, I wonder what the maximum acceptable amount is. I’m not really worried, just interested if anyone knows what that might be. 
cheers

Nick

User
Posted 23 Nov 2023 at 21:59

Hi Nick

Ref. The Sertraline part of this discussion, I can thoroughly recommend it. I was becoming depressed and stressed following the third (my own) cancer diagnosis in my family this year, so went to the GP. She prescribed it without hesitation. I am 2 weeks into taking 50mg and it is starting to make a real difference.

Ian.

User
Posted 23 Nov 2023 at 22:19

Thanks Ian. This sort of overlaps a bit with my other thread but I’m glad it’s working out for you. In the end I haven’t yet seen the GP about taking it as I’ve been feeling better. All that running and gym (and not working) has paid off! But I’ll definitely keep it up my sleeve.

Cheers

nick

 
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