Decapeptyl plus darolutamide: side effects?

Hi Dave/Carl28 

I started treatment 2 and a half years ago - triplet; Darolutamide with 6 rounds of chemo, and I switched from Degaralix to Decapeptyl 6 months or so ago. I'm stage 4 with spread to lymph nodes and multiple bone mets. 

I also had 6 rounds of RT to the primary tumour after chemo - my oncologist said this was palliative, to potentially ease symptoms further down the line. Not sure if chemo could be added later for you I.e. not part of the triplet package? I know that a carbon based chemo is often used later as second line treatment if/when HT ceases to be effective - although this does raise the possibility of nasty side effects (which Mr U has experienced).

So to answer your first question, on your combination, I'm doing pretty well after 2 1/2 years - side effects are the inevitable sexual ones from the rock bottom testosterone levels (loss of libido and ED), and I am a little more fatigued. Strength loss has also happened, but I've increased gym sessions from 2 to 3 times a week. It's more noticeable for upper body (maybe 20% loss on bench press) as opposed to lower (10-15% loss on squat and deadlift), but not sure about muscle endurance impact. Also age would have an effect too as I'm judging 47 year old me to mid 30's.

I think staying positive and optimistic and not expecting to lose strength and energy helps as I'm really trying to keep doing everything I was prior to diagnosis. Being relatively 'young' is an advantage too, but it's certainly easier keeping exercise habits going rather than starting from scratch. 

The thorny question of prognosis is not one I really discussed with my oncologist. I did ask about and have researched predicted time until castration resistance, but this is a big unknown. Certain gene mutations (BRCA1 & 2) can hasten it, otherwise they don't really know why some men have months or nothing of HT effectiveness whilst others get years - even a decade or more. There are studies and limited trials, so hopefully some details will emerge, but the majority of trials are for mCRPC (castration resistant cancer). 

I'd certainly ask about RT as it seemed to help reduce my main cancer site size. Chemo when HT is still working, I'm not sure about but they might advise it for you. I was lucky and had few side effects, but I'd say chemo is a bigger deal than RT in this respect. 

Cheers and good luck with it all! 

Hi BrightonBiker, thank you for such a comprehensive reply. I shall read closely. 

One of our differences is age  -  I'm 77 and I guess quite a few my age get a bit wearied pedalling over 20 miles a day/averaging 100  per week. Plus I have extreme COPD.

Also EBRT in 2021 seems to have cleansed the prostate   -  PSMA PET  didn't show any take there, only in numerous local and distant lymph nodes. No targets for RT, no main cancer site. 

I entirely take your point re continuing exercise rather than trying to start. I've cycled pretty much "every day" for last 23 years, including during RT. Guess "carry on" is best antidote to newly increased, inevitable, loss of energy etc.

I declined the chemo element of triplet treatment, for now at least, because of extra side effects. Were I 10 years younger my decision may have been different. 

MY calculation of castrate resistant is about 12-18 months from when psa first topped 2, which was about 12 months before treatment restarted, so at most 6 months from now. (My GP's monitoring was, bluntly, negligent. And my acceptance of Oncology's optimism and GP's interpretation of numbers was, bluntly, foolish and blinkered.)

But then I am old and lived a less than healthy life style. 

Onward and downward.....so wet today exercise will be just 10 miles on the turbo, partly in open air.

My very best wishes to you.

Good luck, Dave 

Hi Carl28 

Read this to BW, his opinion is that this is the nature of the beast with HT, certainly true with a combination of the two. Muscle loss and fat gain. The only way round it is to exercise to try to keep things in balance. No energy and fatigue is also something you will have to deal with . His answer is sleep more, but you will find your way with your body. This is the trade off of using powerful drugs that suppress the metastatic activity, which it is very good at doing. The whole objective is to keep you alive as long as possible and overall it can be very successful at doing that. Embrace it, work with it - his opinion 

Good year for BW. Initially he thought the worse for his prognosis, like you, but is now coming into his 3rd year since diagnosis/ treatment, he realises that he’s harder to kill off than he first thought , drugs and treatment are just too good. 

L

Thank you L/BW. 

My psa level on recurrence was very low compared with what would be "normal" given the extent of the metastatis revealed by PSMA PET. So I don't expect "as long as possible " to be very long! Nor do I want it to be just for the sake of it  -  quantity of no interest.

Muscle loss apparent to upper body. No weight increase, but then nor was there during 30 mths of decapeptyl in 2021-23, other than 1" on waist. I've never reached 10st even when I was a very heavy drinker. 

Same 7 hrs a night kip plus a 45 minute afternoon nap as last 15 years or so.

I'm actually starting to wonder if I should have accepted any new treatment on recurrence given how late it was identified. I certainly won't agree anything that reduces my quality of life significantly beyond where I am now. "Get it over with" seems attractive.

A nice, dry, if increasingly chilly, short 15 mile ride this a.m. Do for today!

Good luck to you both, may you have more good years, Dave.

My thanks for that Andy. I shall peruse!

Buried in bio is "following PSMA PET (Stage 4, some distant metastasis, lymphs only) etc, following bicalutamide began decapeptyl. After 29 days psa dropped from 4.5 to 0.95 and testosterone from 24.5 to 0.7 so consultant added doralutamide...."

0.7 is I think "good", whether or not 24.5 was high I know not.

Next test end March is for psa AND testosterone.

Thanks again,  good luck, Dave 

Hi - sorry but my post has been vaporised as it infringed on guidelines (had a link they didn't like and referenced things beyond my personal cancer experience). 

Nevermind... let me know if you can't find the research article and want to read it. 

I can't and I do! 

Dave.

OK, so I wrote this in Google:

"How to mitigate effects of testosterone at castration levels"

And you look for the 6th result, a site called Frontiers - which is an open access research paper publisher.

HI BrightonBiker,

Good to see you cycling and keeping positive. I have just been told I am Stage 4 with tumors in the spine, Pelvis Lymph node and right lung. I had RT 2 years ago along with Brachytherapy at the Christie Mcr. been good since then until PSA rose to 8 in December. I have been cycling at a good level, even road and track racing for last 12 months but am now concerned on ability to ride. I have been given Darolutamide and will start hormone injections this week. What can I expect regarding fatigue?. I am 56 and still work and love to ride my bike

Hi, I reckon that the sometimes quoted reduction of 20-25% in strength, stamina, etc from decapeptyl plus doralutamide is about right when translated into cycling performance. But then at 77 with COPD there are other factors affecting me!

Good luck, Dave