HT - how long does it take for side effects to take effect

Hi sscrable,

I'm further behind than Derek, been on HT for about 6 months, starting in July 2024. I took his advice with keeping active as much as I can, biking to work (not far! 10mins), weights and an exercise plan. I did ease off during radiotherapy though. For me loss of libido kicked in after about a month, though I've found tadalafil works very well for getting an erection, I'm on 5mg daily, doesn't increase desire though! I've noticed I'm gaining fat round my tummy, still weigh the same though, probably due to muscle loss, I feel weaker.

My elbows ache, mild at first but now left is quite uncomfortable when lifting something at a stretch like a bottle of water.

I've escaped the worst of hot flushes which again I noticed after the first month I'd say, and only get mild ones at night sometimes. My body hair is thinning, noticed this over the last month, not too fussed as it should grow back once I finish HT in 18months time.

I consider myself quite lucky, hopefully your side effects will be mild too, all the best with your treatment

John

I was lucky and never had the hot flush problem. It may have taken more determination to keep up my usual levels of physical activity, but I did get tired in the evening (and go to bed early) and it is hard to say when that became significant. Lack of physical stamina became much more obvious after radiotherapy, but I got over that relatively quickly apart from needing more sleep.

Similarly loss of body hair I was hardly aware of until I suddenly realised I was bald below the neck. Increase in weight (and waist measurement) was also slow, and seemed to continue beyond the 9 months when the last zoladex should have run out. But three years later physical strength is mostly back (allowing for the fact I have got older in the meantime), weight is almost but not quite back to where it was, and there is hair in all the normal places though it is much finer than it used to be (e.g. underarm, more like baby hair). I still want early nights though.

Good luck.

Yep, I had that too sometimes. Now that I’m off the poison I get quite bad cramps in my legs and feet when I’m in bed. For a long time after starting HT I also had restless legs , no idea what that’s all about🤷🏼‍♂️

I had this with Zoladex, along with "restless leg".  It was exacerbated when I had a a Zoladex injection inserted as intramuscular rather than sub-cutaneous resulting in a far quicker release. The effective overdose increased the leg pain and added symptoms akin to those from peripheral neuropathy. Luckily the extreme symptoms faded over the 3 month duration of Z's effect but I concluded that Zoladex does have some unpleasant side effects, even if my GP wasn't willing to concede it.

Similarly to your experience Derek, I had leg cramps at night during my Z experience but that's completely disappeared now.

This might support the view of your oncologist Hieronymous. although your triple hormone treatment is way tougher than what I had to go through.

Jules

Much like everyone I can only say what I experienced. To give some hope they were nowhere near as bad as I I had read about or expecting but I’m sure/I know there are others both better and worse 😔than I. I had initial aches and pains in legs and chest and a very quick muscle loss. Ive lost weight but then have changed diet, alcohol intake and have changed exercise to lower intensity but longer time. I’ve not really been too bad with the hot flushes but weirdly tended to get them concentrated round the armpit's (no idea why?) for the first 8 weeks but that seemed to calm down. I do get tired but previously I struggled with sleep so strangely it’s helped with that. The worst part I had was 4 very low days where I wondered is this it for 2 years but very quickly improved after the 4th day. I have to say I’m a bit more emotional but so far the 2-8 week period seemed to be worst then the last 6 weeks I seemed to have got used to it.The only other thing I really struggle with is hydration but have a feeling that is more the abiraterone than the zoladex.

Good luck and really hope the side effects are few and tolerable for you.

Stuart

Spongebob

I have only been on it six weeks , but am virtually copying your experiences already apart from the weight , and the flushes increase in numbers and intensity daily.   I have even got the pain in the sole of one foot today after a 2 hour drive - never had that pain in my life before !

I've posted this here before but ... 18 month v 3 years ADT

5 year disease specific survival rate was 96% for 18mth treatment and 97% for 3 years of ADT

Overall survival rates at 5 years were 86.8% for 18 mth and 92.1% for 3 years ADT  [I haven't figured out what "disease specific" includes or excludes. I'm guessing that some people died of other causes and maybe a few died of causes related to ADT like raised blood pressure and higher cholesterol]

10 year survival 87.2% for both 18 mth and 3 years.

As you can see there's very little difference in the survival rates and as I've commented before, if you have three years of treatment, your testosterone, if it comes back, probably won't do so for a year and a half, leaving you only six months to die within the 5 year period, which would be nearly impossible if we're talking about badly damaged cells making a massive comeback.

Even the best figures here aren't 100% and there's a chance that the initial radiotherapy didn't kill or mortally wound all the cancer in which case the ADT can't finish it off, however long the treatment might be.

Jules

PS I'm in limbo at the moment. 7 months after I'd finished Zoladex my psa was still undetectable. Now, about 2 years after Zoladex my psa is up to 0.6. Hmm. At the same time my testosterone is up to 27 so that's probably not helping. the next 3 months waiting is going to be tough but I don't regret going off Z when I did.

Edited by member 15 Feb 2025 at 03:40  | Reason: Not specified

I keep reading , and reading , and reading !    Everything seems to be so random - there is no surefire path.    People seem to stay on HT for 2 or 3 years after their RT - but what happens if you come off HT straight after your 20 sessions of RT - does it make chances of recovery 10% less , or 50% less ?   -   Or does it mean the RT treatment would have been a waste of time.  The way the side effects are getting worse for me , coming off the HT will , I think , be my preferred option , but only if it is a small percentage difference in my chances of living ( maybe 10 or 15% ). ( I am 72 , if I was 62 I would definitely stay on the long treatment path )

I think the theory is that continuing HT after RT is finished mops up any micromets.