New To Group - Can I ask some advice?

Hi TamHutch , sorry you have joined the club.  Everyone is different in how they respond to various treatments. HT can be quite severe with some people and others almost have no effect.  I don’t know anything about you, but exercise seems to be the main antidote for fatigue, although there is a balance and you mustn’t overdo things.  Listen to your body.  If exercise doesn’t help, then report it to your team and maybe another HT can be tried.

The hot flushes do often reduce in intensity/frequency when your body has got used to the hormone therapy, but might still be significant. There are a few medications your oncologist can prescribe to reduce and possibly stop them; Cyproterone, Medroxyprogresterone, or Megestrol. They all require blood tests to make sure your liver is coping OK,

Exercise should be considered mandatory while on hormone therapy, and might be available on prescription locally - ask your clinical nurse specialist or support worker. This will help with many of the hormone therapy side effects (particularly fatigue), although not hot flushes. Even if no formal exercise programme is available in your area, walking is one of the best exercises, and thats infinitely adjustable in intensity and duration as your fitness improves.

Hello TamHutch 

Welcome to the group although I am sorry to see you joining us.

As others have said walking is the minimum exercise you can do to relieve fatigue - I do 2/3 miles a day and if I feel tired during the day I take the dog for an extra walk - the walking also helps prevent weight gain, another HT side effect.

I had bad hot flushes on HT and found the natural cure for me was Sage Tablets  - they don't work for everyone but cured mine within a fortnight and I've not had one since. As with any medication check with your team before starting them as you don't want a medication clash.

Best wishes - Brian.

Hi Tam,

I think they were very optimistic to say it is a 'mild treatment' ... maybe for some but for the majority fatigue and flushes are very common. 

In my case, I luckily dodged the flushes (dailyOrgovyx- no injections). My friend on same HT had really bad flushes, like yourself. He contacted me today and after 2 sessions of acupuncture (in the ears!) they have gone (the flushes, not the ears!). It could be another consideration as well as trying sage tablets or more meds. As we say, we're all different and it's just finding what works best for you. If nothing works, Estradiol patches are 'non-inferior' (ie as good as SoC HT and no flushes but possible man-boobs! Worth discussing with your onco if it comes to that.

I do get the fatigue, especially after my RT. Exercise is key. Walking is ok if you enjoy it (I don't) and it's reported that weight bearing exercise is even better as it prevents bone density loss. I keep some weights in the lounge and intend to join a gym when my RT fatigue wears off. I will also get 'back on my bike', also recommended. when RT fatigue subsides. My yoga too is a great help.. I'm no longer needing the 30m afternoon nap, but listen to your body, do it when necessary and don't overdo it.

Hope this helps.

Good luck and hang in there.

David

Thanks for that - exercise seems to be the consensus as the best thing for fatigue. At 84 years old and limited mobility it’s difficult for me - but - I’ve just made a pact with the wife to start an afternoon walk, Strting slowly and hopefully increase a little each day. Thanks for you help, it’s appreciated.

Hi Andy, thanks for the info - interested to hear about the meds that can help the sweats. I do not have an oncologist - i see a Urologist sometimes and my GP  - but i read just last night about some of those meds - so will try to discuss with GP or Urologist, if it helps I’d be happy to try it - I’d try anything that helps! Cheers. Tom

Thanks David - I think the acupuncture could also be worth a try, although it says it’s not a “proven therapy” - I’ve heard of people having success with it. Will check it out - and I’ll be taking my ears with me to! lol! At least we can still laugh hug! Cheers, Tom.

Thanks David. I was wondering if an alternative HT treatment would be possible to try? Not sure how it works or if they are all pretty much the same. When I saw my GP last week I was at the stage of just not taking any more Injections as this has been a real tough 6 weeks. But he said - if I stopped the injections my cancer would spread and my pain would be worse! Wasn’t very encouraging anyway - but if a change of HT - I know they will all have side effects of sorts - but some other injections would maybe have less of these hot flashes than the Prostap 3? Just not sure if they are all the same or could a change be slightly better? Any feedback welcome. Cheers for your help. Tom

Tam,

My guess is that all the 'agonists' (eg Prostap, Lupron, Triptorelin) are all pretty much the same but individual responses vary. Not realistic to just keep 'fisihng around' every 3 months (1 month also possible with some of them).

I went for the 'antagonist' Orgyovix - just as powerful but much faster testosterone recovery at the end of the course. I also liked the daily pill idea as I could 'jump ship' at any time. But as I said earlier, I get no hot flushes (so far-2 months, could change) and my friend (the one with the punctured ears) did on the same drug,

The only guarantee(?) is Estadiol patches as they do not suppress testosterone. (But man boobs likely) Worth a discussion with your Oncologist.

Cheers

David

Estradiol patches do suppress Testosterone - that was the basis of the PATCH trial which used Estadiol patches as hormone therapy to switch off Testosterone.

In men, Estradiol is normally manufactured from Testosterone by aromatase in body fat. It is mainly the loss of this Estradiol due to loss of the precursor Testosterone which causes the hot flushes. Same with women at menopause, although reason for loss is different. Not everyone gets hot flushes - about 20% get no hot flushes, and about 20% get severe hot flushes, with everyone else somewhere in between.

So yes, using Estradiol as the hormone therapy drug does mostly avoid hot flushes, because you still have Estradiol. As you suggest, the incidence of breast gland growth is significantly higher when using Estradiol patches, and the usual way to avoid this, taking low dose Tamoxifen, can't be used as it stops the Estradiol hormone therapy from working.

There is an alternative protocol which is to use regular GnRH/LHRH hormone therapy medications (Agonists or Antagonists - makes no difference for this purpose), and to use a very low dose Estradiol patch, just to replace the missing male Estradiol level, not to act as the hormone therapy drug. In this case, Tamoxifen can be used, as the Estradiol is not being used as the hormone therapy drug.

Although the PATCH trial was a success (and there's still a second PATCH trial running), this use of Estradiol patches is not as yet sanctioned by NICE. So you would need to find an oncologist willing to use Estradiol off-label, and I haven't heard of this being done outside of the trials. If you were going to try pushing for this, I would personally push for the alternative protocol. That wasn't used in the PATCH trial, but it was used by the late Snuffy Myers with his patients.