Side Effects from Triptorelin Injections

Hi sandgrown and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

If you haven't already, you could type 'Triptorelin' into the search  area at the top of the page to see if there are any previous posts which mention it.

While you're waiting for replies, it would be great if you could put something about your husband's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope your husband's side effects go soon.

Sorry for missing your thread sandgrown but a belated welcome from me.

Men can suffer pain in the testicles as they shrink due to the drop in Testosterone, along with other aches and pains as the body generally adjusts to his new hormone levels. This is the same for the fatigue which unfortunately most men on HT have to battle but the best remedy for this is exercise and generally trying to get as fit as possible - it really does work and can also help reduce many of the side effects which might come with the treatment. Insomnia and low mood are also side effects from the HT. As he has discontinued treatment then his Triptorelin should start to come out of his system 3 months after the last injection, so by now, but it will take a few months for the testosterone level to return to normal. 

I expect your husband will be monitored via his PSA to check that everything is still ok. With radiotherapy it is expected that the PSA will continue to drop for anywhere between 18 months and up to 2-3 years until it reaches its nadir (lowest level). Don't worry if it bounces around a little bit, particularly as the triptorelin comes out of his system but be cautious if there are 3 consecutive rises or if the PSA level goes 2 units above the nadir - this would be the time to investigate if anything is happening.

The radiotherapy can also cause fatigue as well as anaemia. If your husband's general feeling of being unwell doesn't improve then I would ask for a full blood check.

Please come back with any questions and we will try and reply in a more timely manner. By the way - getting the PSA down to 0.38 is a good sign.

Hi sandgrown , sorry to have also missed your original post (thanks latchbrook for bouncing it up the list). Alwayshope  has given you a great answer. All I can add is that we are all different and we react differently but where HT & RT are concerned, trying to keep fit seems to be key.  I don’t know if your OH exercises but feeling down, fatigued and generally low hits most of us and moderate exercise seems to help get us out of a downward spiral.  Best wishes, David

Hi Sandgown,sorry late at getting back to you but great news as can be,keep fighting and stay strong Robert

Hi Sandgrown. This is my first reply on this forum.

I have taking injected triptorelin for almost 3 years now.

Diagnosed late with cancer Gleason 4+4 with ruptured prostrate into the semicle vessels.

The hot sweats,fatigue,muscle loss,aching limbs and not able to sleep more than 3 hours Max at a time is my experience so far. Also find sleeping lying down difficult.

Also had 20 days of radiotherapy. This left me with damaged blood vessels in the lower colon and results in blood loss periodically. I have had cauterisation treatments over last 2 months and blood loss cycles have come down but not cured yet.

Bladder still not stable so I wear incontinence pants every day.

Won’t go into the chemical castration triptorelin achieves.

I guess what I’m saying is the side effects can be tough and it is challenging to survive a day at a time. 
I can’t excercise properly because I am waiting for hip replacement surgery.

However I do what I can, walks with a stick and some DIY.

I can’t go swimming because of blood loss and lack of bladder control.

So maybe I can inspire you to cope with the triptorelin regime if you want to be clear of the cancer.

My PSA is now down to 0.10. And my last injection is Nov ‘24.

Good luck with your fight and I hope the cancer can be eradicated.

Best wishes, Bernie

Hi, Just joined the forum. Ive had 2 bouts of radiotherapy and been on triptorelin for 18 months. Injected every 3 months. It is hard going. Ive had all the usual side effects and Im going to ask my oncologist if I can atop it now. Good luck to your husband.

Thank you for your reply.

A lot has happened since i first ask questions on here.

My husband had to have a TURP done and after 2 injections of Triptorelin the oncologist stopped it due to my husbands severe reaction to it.

Last May he started with spinal pain and had a MRI but luckily it wasn't related to cancer spread. Just spinal stenosis. However that has impacted his life more than the cancer ,his mobility is very poor. 

He is also now incontinent and uses pads but he has got used to this now .

He is having an MRI next week and then an appointment at the end of July to see if there is any trace of the cancer left  Hopefully it will be good news ,he will also have a repeat PSA and then we will go from there.

I t has been a hard journey ,but we have always kept a positive mindset, he was diagnosed with Tonsil Cancer in 2019 .He had his tonsil removed and also Lymph nodes plus radiotherapy.  Hopefully on Monday he will be discharged from anymore follow ups. 

Its funny how things turn out because out of our darkest moments something positive has happened. My daughter decided to re train as a Therapeutic radiographer and is now fully qualified and has a full time permanent position ,so if my husband hadn't become ill that would not have happened.

I wish you the very best of luck and it is an old cliche but just take each day as it comes and make the best of it with a positive mindset. Hard to do at times i know.

Thank you for your reply ,i have only just been notified about it hence why i did not reply sooner.

Unfortunately my husband had to come off the triptorelin due to really severe side effects after 2 injections 6 months apart.

He is having an MRI next week and then a PSA and a oncology appointment in July ,so we will see what happens then.

I hope that things are now positive for you ,and thank you for taking the time to reply,

Best Wishes.

Hi Sandgrown,

Yes, I have struggled with side effects now for 3.5 years. Injected Triptorelin for 3 years. One month radiotherapy as well.

Prompted me to contact cancer support recently.

this is a copy of my notes:

75 yrs old

Prostrae cancer Gleason

4+4 Diagnosed Nov 2021 at Warwick Hospital

1. I would like to discuss side effects that are ongoing after 3 years of triptorelin injections.

Stopped Nov 2024.

Typically hot sweaty flushes for 10 15 mins.

Extreme fatigue

Aching muscles and muscle loss

Broken sleep patterns

Penis shrinkage and total ED.

Looking at info on your site and prostate cancer UK it suggests that side effects can last as long as the injections were taken ie 3 years.

My immediate concerns are that I am booked in for a total hip replacement June 3rd this year and the challenge of rehab.

Sorry my notes will not paste in correct format but hope you can still read

kind regards

 ernie

Hi Ernie

I've been on Decapeptyl (Triptorelin) since June 23 and am just finishing HT after just over 2 years treatment.

I have ED and penile shrinkage and the usual weight gain, fatigue and muscle loss.

Overall I've found Triptorelin tolerable although it definitely has a negative effect on quality of life.

In March 24 I had a fall on the stairs which broke my right hip and I had a half hip replacement the next day.

I got through it and my progress with rehabilitation was generally very good and I'm now pretty much back to normal.

So don't despair work on the exercises they will give you and you'll get through it.

Best of Luck

Rob