Body changes due to Darolutamide

Hello newtoallthis. 

Nothing strange there sadly, Hormone Therapy of any type removes your testosterone which helps with your "male features"!

I have been on Decapeptyl for almost 2 tears. Body hair gone, penis and testicles shrunk, ED present, hot flushes, itchy skin, fatigue, mood swings and weight gain to name a few "side effects".

A funny story - I have a place in Turkey and spend 8/10 weeks a year there. I use the same barber for a haircut and wet shave.every time I am there. The second year of my HT my barber just asked me outright if I had Prostate Cancer and was on HT? Apparently the barber's dad is and shaving him he noticed the whiskers were hard to shave and very soft - mine had gone the same way!! .

As for the hot flushes, sage works for me but not everyone. The oncologist was probably going to offer you Medroxyprogesterone. Here's our guide to this and the possible side effects:

Medroxyprosterone-acetate.

I hope this helps and there's nothing wrong. I wish you well moving forward.

Best wishes - Brian.

Hi newtoallthis

SNAP!

Been on Darolutamide since February this year and Zoladex since Nov 25.  

Beard did stop growing virtually totally but is creeping back in whispy bits now (nearly two months after finishing chemo) and is thin. I used to have "hard" whiskers  My hair also suffered due to chemo and I am now sporting a Yul Bryner.

My body hair seems to be disappearing as well, in spasmodic patches - but underarm has gone completely.  Seems to be almost "rubbing off" in areas of contact. I once had a very hairy chest but that has now gone....

Shrinkage of genitals is par for the course I am afraid - but I have been to see about getting a pump prescribed to rehabilitate my dwindling assets.  It is important to be aware of potential atrophy of the penis so I contacted my CNS to get the process started.

My USP has always been my bushy (white) moustache - sadly this is a shadow of its former glory but it is hanging on (just).  It seems to have been one of the things that the folk in Kalkan (Turkey) always remembered about me on my many holidays there.  Millibob that is a strange story - but how observant of the barber, he must be a good one!

My hot flushes come and go - an intense flush over a minute or two then it goes - but dealing with it in this weather is exhausting at times.  I have not taken anything for them - I too am trying to limit stuff that I am being given.. I just use a fan (handheld).

I am also gaining weight and my cholesterol and blood sugar readings are rising...

The fatigue I was getting used to but I have just stopped my Prednisolone steroids and the levels have increased enormously, and hopefully that will pass - so just get back to normal fatigue!!

So yes - all normal I am afraid.  BUT my PSA undetectable from a 953 starting point nearly a year ago, so something is working.

All the best

KrisPy

Thanks for that, I guessed I would not be the only one but it does seem to vary greatly from patient to patient. I also have gained weight which I really don't like having been portly all my life I certainly do not want to get any bigger. I have been watching my diet more closely lately and hope to keep it under control. I already had a good set of man boobs before my op and certainly don't want them to get any bigger either!

Appreciate your input Brian as always

My GP put me on the LIVA programme to support diet and lifestyle change as I am now pre-diabetic ( in some part due to the drugs but I was hovering in the danger zone before this kicked off). I have found it helpful and supportive.  Not sure if you can get to it directly or only through referral via GP.but I think you have to be pre-diabetic to get onto it.  My HbA1c score was 45.

KrisPy

Hello newtoallthis 

newtoallthis said:

I also have gained weight which I really don't like having been portly all my life I certainly do not want to get any bigger.

I put 3.5 stone on in 3 years Hormone Therapy - when I went back on Hormone Therapy 10 months ago my oncologist refused to sew my lips together so she prescribed Ozempic the weight loss jab.

No side effects and I have lost 2 stone and still going down - Happy days.

Best wishes - Brian.

Now that does worry me Brian as I'm only six months in taking the drug. If I gain significant weight going forward I will certainly have a chat

Hello newtoallthis, 

I'm on darolutamide coming up 2 years now alongside prostap.

I'm not losing my hair but it's thinning in places like armpits and pubic area, fortunately hair on my head is same but it now grows slowly. Facial hair is thinner and weaker and I've gone from a daily shave to shave every 4 or 5 days. Testicles and other "gear" have become almost as undetectable as my PSA but fortunately hot flushes are not a major problem for me with just random episodes - some days one or two, other days nothing. 

It all sounds pretty statndard I'm afraid, but if it does the job......

All the best,

Derek.