After a break, Letrozole, continued...

I've been back on Letrozole for almost a month. The pain has come back pretty much like its initial onset, the ankles and legs first, followed some weeks later by the thumbs and hands. Curiously the left thumb got the pain first this time. The right thumb has started up now, in the last few days, but neither have got as bad as they were before. Yet... So fingers crossed (only after they've warmed up!) that they don't get as bad as they were before the month off. The ankles and legs are as bad as they were before.

This time I've been taking it at night but I'm going to revert to the morning. I thought a night time dose would have me sleeping through the six - eight hours of mucosal dryness. And while this is true, it means that I'm not hydrating as I would during the day and am waking up parched, and with very dry and consequently irritated eyes. And if I drink water everytime I wake up at night it means I wake up more to pee, disturbing my night even more! Plus, I suspect the dryness is making me snore more than usual... So come 1st Feb, it's back to taking it in the morning.

@Artferret

That's actually a comforting thought - mozzies have been at me lately,  I hope my blood thinners get them!! 

Probably looks like this now @"Patti J"  hehehe

Had an insect bite yesterday. Can't imagine what the drugs in my body would have done to it!😀

Last night (after the previous night of pain) I bombed myself out with two Panadeine Extra and an Endone. Seemed to dull the pain sufficiently during the night. Off for a swim shortly. 

Perfectly put @kezmusc.

Agree @Zoffiel.  It's penance for getting through the rest of it not too badly LOL. 

 It does stand to reason that if you aren't having too many problems your probably just getting on with life and not posting abut not having any problems.

Half the mind blow is that nobody really knows if they are going to work anyway.    Will you become resistant to it, will it mutate and find another way to grow, do you have the dodgy genes that inhibit the effectiveness of these drugs.  Like the rest of it, no definitive answers as to how you'll respond.

This makes it very difficult to decide whether or not the effects on your body, finances (if the side effects limit your ability to work) and general impact on your daily life, sex life and mental well being is worth the agro.

I am sure if it was a definitive "take this and it will never come back"  we'd probably just put up and shut up, but it's not that cut and dry.

I think the vast majority of people will give it a crack if that's what's been recommended regardless of what we say.  At the beginning your too fearful not to I reckon and there are plenty of people who will jump on and give a more positive side to the conversation.

For the rest of us held to ransome by these preventative treatment It becomes  a personal choice as to how much you're willing to sacrifice for a maybe. What long term effects, that may not be reversible eventually, and are not fully understood as yet you are betting on and whether the quality of life you have for the next decade is acceptable.  Only you can answer that one.

Consisitently confused   :smile: xoxoxo

I think it's a good idea to try these drugs before getting too stressed about side effects. Heaps of people have minimal trouble, it's just that they aren't up in the middle of the night celebrating that, so we don't hear much about it. Half their luck.

I also think that our shared experience suggests that recovery from the more common painful side effects is quite rapid, so if you do find them intolerable, you can have half a chance at retrieving some functionality. I worry that people may refuse to even try these drugs because someone else, like me, hates them. If my onc had thought Aromosin was the best bet for me, that's what he would have initially prescribed. It's turned out to be the choice of last resort (for me) and I hope it gives me a bit better chance of survival than opting out altogether.

It's eally interesting how differently we all react and what we react to. I had absolutely no trouble with Tamoxifen 10 years ago. None. I also worked right through AC chemo with the exception of a couple of days lying on the floor moaning because of the Neulasta shot. (another drug that has wildly variable effects) 
TC and AI have been a train wreck, which came as a nasty shock. I had it in my head I'd cruise through this episode too, just goes to show how wrong we can be.

@Zoffiel I'm taking your experience into account as I think about Letrozole. @kmakm - yes. When I see my oncologist later in the month, I'll ask her about Aromasin. I'll also ask about percentage of potential usefulness of AI for me. she originally said it would be more use to me in terms of prevention than chemo and radiation. But anyway ... at my age, I'm asking questions about quality of life rather than quantity. 

I had a dreadful night with aching in both femurs, in spite of taking Panadeine Extra. And my left tailbone (though that may be arthritis) - though it wasn't a constant problem before all this current shit.