Started h/t. Radiotherapy to follow. Question please.

Hello MWP 

I was on Decapeptyl for 3 years - I got away with most side effects for the first 3/4  months and then they struck!!

You can read my journey by clicking on my name/avatar. The trick is to keep fit and active, because if nothing else gets you the fatigue will. Some people are lucky and get away with it - I had the full list and some more.

Would I do it again for a "Curative Pathway" - Oh yes I would!!

Best wishes - Brian.

It depends a lot on the person, apparently it helps if you are fit and exercise a lot. I have always exercised but have gotten quite fit since the diagnosis.

I've also heard people say that eating soy helps with hot flushes (but never tried it).

I've only been on ADT 6 months (and 15 days ) and so far been lucky with the side effects. No fatigue from either RT or ADT (including the last 6 weeks adding Abiraterone) and very mild hot flushes; I get a bit warm under the duvet and need to stick my feet out... No brain fog.
Early days still I know....

A colleague (also a fit guy) who had similar treatment has just finished 3 years of ADT with no fatigue and very mild hot flushes like me, we didn't discuss man boobs  but none here yet. 

I did get:

1. zero libido - (not an issue,  for me, we just cuddle more)
2. last time I checked i could get a serviceable erection but can't be bothered checking (see 1 above)
3. very mild hot flushes
4. Loss of strength/muscle mass (I know this because I've been doing weights for a long time)

So hope for the best and exercise, (including resistance training) but be prepared...

One of the biggies that is not immediately impacting QOL and is often overlooked is loss of Bone Density and possible osteoporosis. so weight bearing exercise like walking is important and make sure you are not deficient in Vitamin-D (get a test).

I would also recommend a DEXA scan; these are covered by insurance here on ADT, maybe where you are too? They are not expensive anyway and it is good to get a baseline and to monitor it.

good luck 

Mark

Hello MWP 

Again, a cracking point in petabyte's post. Anyone on Hormone Therapy should have a prescription for Calcium/Vitamin D tablets.

Check with your team or GP.

Best wishes - Brian.

Hi MWP,

I was on Bicalutamide tablets initially for 2 weeks before starting on 3 monthly Decapeptyl injections with the tablets finishing after I completed my RT.   For the first month I had no side effects from the HT apart from a diminishing sex drive (but no ED), & then along came the hot flushes.  There didn't seem to be any pattern to these & they happened at random day & night, but only lasted a few minutes each time.

It does seem to be random how each individuals body reacts to HT & many get away with mild side effects, whilst others do seem to have a wider variety.  I consider myself to have been quite lucky & would say that they were more of an occasional annoyance (hot flushes) & whilst I did put a little weight on, I was able to lose it over time after finishing the HT.  The one tip I can give is to try & keep fit with plenty of exercise & eat a healthy diet (in my case with more than the occasional treat thrown in).  If it helps, you can read my journey by clicking on my name.

Best Wishes

Brian

Hi !

Welcome to a club nobody want to join but you’re in a good company of very friendly and helpful people in this fantastic forum.

Going on hormone therapy and having side effects is not really black or white. Most of us are in the grey area, probably side comes along gradually and some side stays on and some goes away. A very common side effect is fatigue, a tiredness. Another is hot flashes. Most of us learn the true meaning of what the word Libido actually is in terms of mental state for a man.

When going on hormone therapy it’s really the time to start thinking of:

1. Excercise, excercise and then excercise when ever possible and doing a variation of types of excercise because this really helps you mitigate side effects. If you’re into excercise you may need to come into terms that loosing muscle mass is very common and gaining fat is also common. With that said, a variation of excercise actually can help you still keeping muscle mass and avoiding putting on that much extra weight

2. A well balanced, healthy diet is also important now more than ever. You don’t have to go all crazy in different kinds of diets (if you don’t feel you need to) and as long as you practice number 1 and 2 you don’t have to give up totally on those small treats 

About Libido. Even if your mindset changes, loss of libido is not necessarily the same as loosing sexual functions. Erections is actually still possible for some. When having prostatectomy I think most have recommendation of ’penile / sexual rehab’ and this is also very true and important for us having had radiation and being on hormone therapy. This type of rehab comes with everything from PDI5 inhibitors (Tadalafil daily and etc.) which is actually very good for blood circulation and is very recommended. Penile pump is also a very useful tool. Anyway, even if Libido is out the window this type of excercise is also important to mitigate any possible ED effects down the road.

So, you probably need to get into a mind set that it’s possible you will have some side effects in the near future. For must of us they can be managed and you can really help yourself on your road by doing as much as you can in terms of excercise and eating well. Anyway, best of luck and hopefully you will have a smooth ride down the road 

Best wishes - Ulf