My dilemma: continue or abandon HT treatment?

User

Posted 23 Jan 2023 at 09:18

Started HT treatment last summer and initially found the side effects not too difficult. The hot flushes, debilitating though they are, I can cope with, but now I am also suffering increasingly challenging arm pain at night that is affecting my sleep and mental health.

I'm due a phone consultation with my onco's sidekick next week prior to my next injection of Decapeptyl in three weeks time but am now seriously considering asking to come off the treatment altogether.

I am all too aware of the life-shortening risks this may pose but at the same time not sure I can face another twelve week's course of it if the result is worsening pain than I am suffering now.

I have tried taking pain killers (2 x Paracetamol together with 2 x Ibuprofen every four hours) but the only effect they have is to make me feel nauseous. They neither touch the pain nor prevent me from waking several times in pain every night.

I have thought about asking for an alternative treatment in the hope it might be less difficult, but dread that it could turn out to be a case of 'out of the frying pan and into the fire,' because this is what I have found with other problems in the past.

EG, for Overactive bladder, I tried three different medications but each resulted in worsening effects on my heart (arrhythmia, palpitations and sleeplessness), and ED, where switching from Viagra to Cialis resulted in intolerable leg pain..

Hence my dilemma.

User

Posted 23 Jan 2023 at 14:28

Quite a difficult decision. The starting point is are these symptoms actually to do with the HT or just coincidental?

Can a different HT solve the problem?

Can the symptoms be relieved with other medication, paracetamol?

Of course all the above you have thought about.

Next thing to consider is quantity and quality of life. You're 78 how long do you want to live and what do you want to die of? Now the answer might be I want to live forever and I don't want to die of anything. Well that option isn't on the table.

If you stop HT you might get three years of life with only your other comorbidities to deal with. After that cancer will probably start to take over and dwarf your other comorbidities. You might live another two years, and have a few other treatments so you would probably die at about 83.

If you stay on HT you will have the side effects of HT, but you will probably get to 83 without the complications of cancer, after that well you might become HT resistant or another comorbidity will get you anyway.

The above timescales are just guesses, you may get longer or shorter on any of them, but I think the timescales I have quoted are reasonable averages.

I don't know the answers for myself let alone you. If you don't try and avoid the question "how long do you want to live and what do you want to die of?" You might find the answer for you.

Dave

User

Posted 23 Jan 2023 at 23:39

Have you have had your heart checked?

Unresolvable arm pain doesn't sound like HT issues to me!

User

Posted 24 Jan 2023 at 09:27

Plenty of hot flushes but no pain but that was Zoladex.

GP first, If something is found then your form of HT is probably not the prime source of your pain but could be contributing to it. If all ok then it points to HT. Either way the consultant can be asked, by GP or you, to consider changing current treatment based on GP's findings.

For me long term HT was worth the still ongoing side effects. Everything in life comes with a price. Fighting cancer with or without treatment very much so. Accepting that helped me carry on.

Ray

User

Posted 24 Jan 2023 at 12:25

Times are different now but this still might work. If you have a hospital letter it might give secretary phone number. Or hospital web site might give it. I found them most helpful.

Ray.

User

Posted 24 Jan 2023 at 14:07

If you keep hitting a blank wall and GP can't help it sometimes gets quick results if you contact PALS at your hospital, certainly worked speedily for me.

Barry

User

Posted 07 Feb 2023 at 14:59

Result!

User

Posted 07 Feb 2023 at 15:53

Great news you can have a break from the HT, really hope it’s a very long time before your PSA hits 10.

Just read through this thread. If the pain was down to HT, I know you said you were maybe worried about trying a different one as it’s defintely atleast a 12 week commitment. I was just thinking that some you can get monthly injections which could have been an option?

Anyway no HT needed so don’t need to worry, maybe just an option for the very distant future.

Wishing you good health and pain free 👍

User

Posted 07 Feb 2023 at 16:00

Brilliant news

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

User

Posted 29 Mar 2026 at 19:55

Hi guys, following increasing,hot flushes,aches pains, fatigue and high blood pressure caused by decapeptyl but mostly apalutamide, I stopped the apalutamide to get my blood pressure under control After a few weeks I did reluctantly go back on to 60 mg of apalutamide instead of 240 mg. I then increased the dose to 120mg without any side effects. I did suggest to the oncologist that I went up to 180mg but he said no, we will stick at 120.

Presumably the decapeptyl was keeping the PSA low as it is still down at 0.03.

Thanks Chris

Show Most Thanked Posts

User

Posted 23 Jan 2023 at 14:28

Quite a difficult decision. The starting point is are these symptoms actually to do with the HT or just coincidental?

Can a different HT solve the problem?

Can the symptoms be relieved with other medication, paracetamol?

Of course all the above you have thought about.

The above timescales are just guesses, you may get longer or shorter on any of them, but I think the timescales I have quoted are reasonable averages.

I don't know the answers for myself let alone you. If you don't try and avoid the question "how long do you want to live and what do you want to die of?" You might find the answer for you.

Dave

User

Posted 23 Jan 2023 at 17:31

Thank you Dave. That's as thorough-going answer as I could have hoped for.

It has helped me get a clearer focus on the questions I need to ask the onco or his assistent next week, eg:

- what are the chances of the pain caused by Decapeptyl 11,25 injections getting even worse over the next 12 weeks?

- is it a good idea to switch from one course of HT treatment to another after six months down the line?

- if, so, how likely is it that a different course would make any difference anyway?

- Is there a risk it could even be a case of out of the frying pan and into the fire?

User

Posted 23 Jan 2023 at 18:33

Maybe a doctor or physio needs to assess what else could be causing the arm pain before throwing out the HT? Arm pain at night isn't a commonly recognised side effect of HT. I have arm pain at night but that is down to falling off my bicycle last summer and is taking a long time to heal because of my preferred sleeping position.

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

User

Posted 23 Jan 2023 at 23:35

Sorry to hear about your arm pain Lyn, I hope it's not causing you too much loss of sleep at night and that it will very soon start to dissipate.

Thanks for suggesting I check with my GP about other possible causes, I had not thought about that. The reason I made the assumption that my arm pain is linked to HT treatment is, it started immediately I commenced the Decapeptyl injections and I can think of no other possible cause. Also, I've found that it is listed (along with leg pain) as affecting between one in ten and one in 100 Decapeptyl patients, although there's no specific mention of night pain. The pain was relatively mild at first but has steadily worsened to the point where it is becoming increasingly unbearable.

However I will now make a point of asking my GP - as well as the oncologist or his assistant - about it before deciding whether to continue with the Decapeptyl injections.

EDIT: Forgot to mention, the main reason I associate my arm pain with Decapeptyl is that the waves of pain always coincide with the hot flushes.

Edited by member 23 Jan 2023 at 23:44 | Reason: Not specified

User

Posted 23 Jan 2023 at 23:37

Have you have had your heart checked?

Unresolvable arm pain doesn't sound like HT issues to me!

User

Posted 23 Jan 2023 at 23:39

Have you have had your heart checked?

Unresolvable arm pain doesn't sound like HT issues to me!

User

Posted 23 Jan 2023 at 23:52

Originally Posted by: Online Community Member

Have you have had your heart checked?

Unresolvable arm pain doesn't sound like HT issues to me!

Ah, thank you! Another thing I hadn't thought of. A recent blood test revealed that my serum tryglycerides have risen to quite worrying levels. I've also learned that this is something that can be associated with HT treatment.

User

Posted 24 Jan 2023 at 00:39

Shoulder? Upper arm? Limb pain associated to HT is usually in the joints. I have never heard anyone say it was worse at night - it is more often associated with activity. Pain alongside a hot flush is interesting- I wonder if any of the other guys here have ever noticed that?

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

User

Posted 24 Jan 2023 at 09:27

User

Posted 24 Jan 2023 at 11:44

Thank you everyone for so much helpful advice which I am now following up. I have just described the full background and my symptoms to my GP over the phone who has arranged for me to have my arms xrayed as a matter of urgency plus a range of bloods to check the latest cholesteral which I will be doing tomorrow.

She advised I also speak to my oncologist, however I'm currently finding it difficult to get past the robots that do not allow choices other than to cancel or postpone my next consultation which is due on Feb 7. Grrr!

User

Posted 24 Jan 2023 at 12:25

Times are different now but this still might work. If you have a hospital letter it might give secretary phone number. Or hospital web site might give it. I found them most helpful.

Ray.

User

Posted 24 Jan 2023 at 14:07

If you keep hitting a blank wall and GP can't help it sometimes gets quick results if you contact PALS at your hospital, certainly worked speedily for me.

Barry

User

Posted 24 Jan 2023 at 14:27

I believe this is a separate issue also. I’ve had 2 yrs of Decapeptyl and yes flushes and fatigue and general joint pain/nagging, but nothing as serious as yours.
In the past I’ve managed to contact the acute Oncology ward at Southampton , and they’ve fast tracked me through A&E and got stuff sorted. Lovely they were.
Take care and best wishes

User

Posted 07 Feb 2023 at 11:48

Oh ho! Have just this minute read this:

Triptorelin (ie Decapeptyl) may increase your risk for cardiovascular disease. Ensure you eat a healthy diet, exercise, don't smoke, and take your medications as directed by your doctor for any coexisting conditions, such as high cholesterol or diabetes. IF YOU EXPERIENCE ... PAIN THAT RADIATES DOWN YOUR ARM ... SEEK URGENT MEDICAL ATTENTION.

https://www.drugs.com/tips/triptorelin-patient-tips

Well, as advised above, I saw my GP a fortnight ago. She arranged for a series of checks including an X-ray and a range of bloods, all of which have come back as normal.

So right now I am awaiting a phone call from my onco or his asst to review progress prior to my next injection of Decapeptyl which is due on 24 February. It will be an interesting phone convo to say the least.

Will keep you all posted.

Edited by member 07 Feb 2023 at 11:57 | Reason: Not specified

User

Posted 07 Feb 2023 at 14:11

Re above post: /\ /\ /\

RESULT !

Oncologist has advised I now take a break from HT treatment for as long as it takes for my PSA to return to around 10.

WHOOOPPPEEEE !!!

I know that the effects of the current dose may take two to three months to wear off, but now at last I have something to look forward to.

I have been dreading that coming off the treatment might mean other unwanted repercussions. But the onco was very reassuring, saying there should be no need to worry. whatsoever. My PSA reading is currently zero and is expected to stay that way for the medium term, ie 18-24 months. Meantime he will arrange for another PSA test and review in 5-6 months time.

If and when PSA rises to around 10 he recommends I resume the same treatment. He acknowledges this could also mean a return of the same unwanted side effects but maybe not immediately and that once it does I could then have another break.

Interestingly the onco was not able to offer any possible explanation for the arm pain, just said that it can happen. However the article I linked above suggests Decapeptyl can also trigger a rise in cholesterol, which is what has been happening in my case. Given that the same paragraph also includes advice to seek urgent medical attention if you suffer arm pain it seems likely that this has been the root of the problem.

I shall now get back to my GP with this finding and seek further investigation

Meanwhile I look forward to having my life back !!

.

User

Posted 07 Feb 2023 at 14:59

Result!

User

Posted 07 Feb 2023 at 15:53

Great news you can have a break from the HT, really hope it’s a very long time before your PSA hits 10.

Anyway no HT needed so don’t need to worry, maybe just an option for the very distant future.

Wishing you good health and pain free 👍

User

Posted 07 Feb 2023 at 16:00

Brilliant news

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

User

Posted 07 Feb 2023 at 20:21

Hi LTS,

yourpost seem very stressful.

are you on any medication for cholesterol?

User

Posted 07 Feb 2023 at 20:57

Originally Posted by: Online Community Member

Hi LTS,

yourpost seem very stressful.

are you on any medication for cholesterol?

Coping with the arm pain is a nightmare. The pain wakes me up several times every night. Each time it is simultaneously accompanied by bladder urgency (I have been diagnosed with an overactive bladder) and a hot flush, meaning I have to get up to go to the loo and keep the bedclothes thrown back until I cool down. Tbf the pain soon subsides along with the hot flush but sometimes I struggle to get back to sleep before the next round of arm pain, hot flush and urgency kicks in.

I am not currently on medication for cholesterol because I was already following a rigorously healthy lifestyle until this whole thing blew up and my cholesterol has generally been well under control. Prior to starting HT I was exercising vigorously every day, but the hot flushes were so debilitating I found it very difficult to sustain the exercise regime. However, after reading comments on here from several posters stressing the absolutely critical importance of maintaining fitness, I am now back exercising daily again, not as much as previously but, hopefully, enough!

I will be monitoring my cholesteral to see whether it returns to pre-HT levels. If not, I will consider a course of statins, but this is something I have been reluctant to submit to, partly because of the known negative side effects..

User

Posted 29 Mar 2026 at 10:38

It's now three years - and no less than TWELVE four-monthly reviews - since I declined to accept any further Decapeptyl injections and I'm still holding out.

During that time my PSA has gradually risen again, back from almost undetectable in 2023 to 12.0 in January this year. Side-effects, including overnight spasms of arm pain accompanied by much less intense hot flushes, have never completely gone away despite my oncologist assuring me that my testerone has returned to normal, meaning there can be no remaining traces in my system of the HT treatment.

He was unable to give any reason as to why side effects were still a problem, instead referring me back to my GP. This led me to round of various tests and scans, none of which showed anything wrong. To be fair, the rest of the time I am perfectly fine. There was/is actually nothing at all wrong with my arms, they function perfectly normally. So I am left with the only one alternative conclusion, which is that my brain must be to blame!

Sure enough, a quick AI check reveals the following:

'Yes, the brain can create real pain without physical injury or tissue damage. Pain is actually constructed in the brain as a protective mechanism, not just a direct reflection of injury. This is known as neuroplastic or psychogenic pain, occurring when the nervous system becomes oversensitive, or when stress, emotions, or past trauma trigger pain signals.

Key facts about pain created by the brain:

Real Pain, No Damage: when your brain perceives a threat (emotional or physical), it can trigger pain signals even if no structural damage exists

Neuroplastic/Chronic Pain: this pain can develop when brain pain circuits remain highly sensitive long after a physical injury has healed

Role of Emotions: stress, anxiety, depression, and suppressed emotions (e.g., anger, fear) can cause the brain to produce physical pain, such as headaches or back pain

Reversible Process: because this pain is based on the brain's interpretation of danger, it is possible to "retrain" the nervous system, reduce sensitivity, and experience relief

It is important to remember that this type of pain is not "fake" or "in your head"—it is a real sensation experienced in the body, driven by neural circuits.'

Meantime my oncologist, making allowances for the side effects on my overall health, agreed that provided annual bone scans remain clear, it would be okay for me to continue with my HT holiday until they begin reveal the extent of the cancer or alternatively by the time my PSA reaches 20, whichever is the sooner.

So now, back to the present: my next review on April 17 will reveal the findings of my latest bone scan and PSA test.

Wish me luck!

User

Posted 29 Mar 2026 at 11:54

Hi LTS

Read your posts with interest. I’ve been on HT for just over a year since diagnosis with Advanced PC. Certainly hope that your next results are good news.

Over the last 6 months I’ve had bad shoulder and arm pain, worse at night, and restricts some movement in my right arm. My research led me to believe that it is a side effect of the HT (Prostap for me). I also get mild hot flushes, and high heart rate on walking up inclines or stairs at times. Up until just over a year ago I was hiking over quite strenuous routes at times.

The consultant urologist referred me back to my GP for everything, and said changing to another HT drug wouldn’t alter side effects. I’m currently waiting for a bone density scan (14 April) and a heart CT scan. In the meantime it’s curtailing any hiking or other exercise beyond walking and some physio for my shoulders. Having been discharged from my specialist oncologist following chemotherapy and radiotherapy it seems to be a lot harder to get anywhere with concerns. But keep going trying to stay positive.

All the best on 17 April.

Norman

User

Posted 29 Mar 2026 at 19:55

Presumably the decapeptyl was keeping the PSA low as it is still down at 0.03.

Thanks Chris

User

Posted 30 Mar 2026 at 08:23

/\ /\ /\ Great to hear your PSA and side effects remain under control Chris, Interesting that you've had to take the lead with your oncologist in order to get things sorted.

User

Posted 30 Mar 2026 at 12:30

LTF, badly written on my part, I was told by the oncologist to stop the apalutamide and get the GP to sort the the blood pressure.

Thanks Chris

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