Drug holiday over, today I started taking Letrozole again. At night this time. Don't know that it will make any difference but worth a try.If/when (she said optimistically) the side effects return, I'll start my curcumin trial.It's been really really good to be pain (and dandruff) free for a few weeks. I feel it's given me a boost, and more strength to continue.If the side effects don't settle down my oncologist was quite keen to put me onto Tamoxifen. From what I've read here I'm not so sure. Better the devil you know...?

Okay...had my appointment with the onc yesterday. He was running late and called me to his office and went back inside. I struggled to get up after sitting for so long and eventually managed to hobble into his office where he'd obviously been standing waiting for me. His smile turned to concern and he asked me if I had hurt myself to which my response was "Letrozole" which started the discussion of what he termed frustrating side effects. He agrees that the effect is not acceptable because it will either make the treatment unsustainable due to the misery of constant pain or lead to other detrimental effects on my health as it is limiting activity. He did say that I could have a short break but I would prefer to keep that as a next level option given that it's still early days and my cancer developed so quickly and he's happy that I feel that way. I'm guessing that many women are keen to stop the medication, understandably. He did also say that inflammation of the joints is going to cause problems with the soft tissue surrounding them.So, my immediate course of action is a week's worth of prednisolone and see if that helps as I'm unable to take any of the anti-inflammatory pain-killers. I'm also going to have some blood tests to check for any auto-immune arthritis that, although not caused by treatment, could have been brought on by the trauma of treatment. But this is more of a ruling out as he's pretty sure that the arthritis appearing in my hands is Letrozole related.Another possible course of action down the track is changing the hormone therapy drug. I go back to see him in 6 weeks if the prednisolone doesn't help. If it does, then I don't see him for 3 months. All in all, I feel pretty positive about the response. While he's not promising any magic solutions, he's listened to me and not dismissed my concerns. I have some hope that I may get some normal movement back.

Well tonight my left big toe joint is throbbing with pain that is making me wince and draw breath. Fuck it!I saw my psych today. Amongst other things we discussed acceptance, and understanding the trade off that taking the AI has engendered. I explained that while intellectually I completely understood and was willing to put up with an array of difficult side effects for the possibility of a longer life, emotionally I was drumming my feet into the floor screaming "it's not fair". Of course it's not fair, nothing is and I'd rather be having my current difficulties than be more seriously ill. Nonetheless, it's a difficult adjustment and it's taking time for my emotions to catch up with my rational brain.The psych also spoke of the importance of giving space for anger to come out (in a non-destructive way).Sometimes I feel I just want a big 'We understand that even though you're 'better' you're suffering in order to stay that way, you poor brave thing', which is bloody ridiculous because most people are suffering in one way or another and that kind of validation belongs in romantic novels, not real life. Which is why this forum is ace because we all get it here, which provides us with that acknowledgement and validation.You all make this a much less lonely experience. Me and my aching big toe thank you. K xox

@Josephine66 if you reach the end of your tether with letrozole, ask about Aromasin. It's subtly different and my oncologist said it was not his 'first choice' for me, but the other two drugs made my life unbearable. I'm coping a bit better with this AI but I am far from 'normal'. And no, I'm not accepting this a new normal, I'm just not.I too had an AI holiday a couple months ago and was shocked at the impact the drugs were having, thus my discussion about stopping, thus the Aromasin as a last resortA two time winner of the booby prize, I'd have to reach rock bottom to justify ditching what is, for me, the best chance of buying some time. I've been close and may get there again, but at least for the moment I can work, sort of think, and do some of the physical stuff I used to be able to do easily. Yesterday I spent five hours climbing up and down a ladder putting a roof on a carport. Three months ago I was in tears at the thought of that job (which was why it was not done) so I guess there has been an improvement, incremental as it may be. Mind you, I'm stuffed now, still in bed and waiting for the local massage joint to open so I can crawl down there and get someone to try to ease the foot/leg/shoulder/foob situation. Mxx

@Sister @Flaneuse @kmakm u poor things. I get a little joint pain on my drugs. Normally when I first wake up my knuckles are sore so I have to flex them a few times and it takes a minute or so for my joints to loosen up. I have nothing like the terrible pain and debilitation u all have though. I can completely understand feeling like giving it up. Such a tough thing that what is prolonging lives also causes such a downgrade in the quality of it. I struggle a little emotionally like u Kate - I understand logically that the treatment I have had and the medication are necessary evils and I would much rather above ground than below it but sometimes I yearn for the days when I could wear a lower cut dress or top, it didn’t take me ages to for a particular word to come to mind (I have had to resort to googling sometimes) and the fact that some muscles just feel like they will never recover and get their strength back. Very minor things compared to what some people are doing through I know. Big hugs ladies.

No worries! Personally I have butter over margarine and I prefer full fat to low fat products! It is about our own taste buds and choices and for me I have always had a good cholesterol reading along with my other levels. I was unlucky enough that a side effect of Letrozole was a high level of cholesterol. Now I am not back to the 3 that I was years ago but a 5 which is within the Heart Foundation health guidelines.When I was diagnosed I found myself having a heightened awareness of my health and all the variables that go with it. Just this week I have had a multitude of tests including an ECG and I am pleased to know that everything is ticking along as it should.

After a break, Letrozole, continued...

328 Replies

iserbrown
Member
7 years ago
@Brenda5 you should get that checked out! It maybe something else!
Blossom1961
Member
7 years ago
Natures way currently on huge discount at Coles
Romla
Member
7 years ago
Hi Roberta my Brand is Nature’s Way available from Coles and Woolies.Is a tablet.It comes out half price every now and then.
arpie
Member
7 years ago
Do you have a brand name @Romla and whethet tsblet or capsule? Ta
Blossom1961
Member
7 years ago
@Brenda5 I am not on Letrozole but totally agree that when our body says enough, then we need to listen. Enjoy some quality time.
Brenda5
Member
7 years ago
Thats it, 3 months I lasted on Letrozole. I am having a 3 week break from tomorrow. I can cope with the regular aches and pains but this swelling bone in my foot is just not on!
kmakm
Member
7 years ago
I take this one @arpie, currently once a day. I was advised that this one was the best by my wonderful pharmacist. He said it had the best formula for uptake by the body (bioavailability). He has since left sadly, and didn't own the pharmacy, so had no skin in the game.

I found this article on the www. It's a bit technical but I thought it was quite good. Lots of footnotes to show the sources of the info.

https://www.superfoodly.com/best-turmeric-curcumin-supplement/
Romla
Member
7 years ago
Oops
Romla
Member
7 years ago
This is the one I bought in the supermarket Roberta it’s 600mg.
arpie
Member
7 years ago
Gosh, you are in the wars, @Romla - I am SO glad the tennis elbow turned out not to be mets. I was checked for carpal tunnel at my last GP visit ..... she got me to hold my hands skin to skin from tip of fingers to wrist (both palms facing outwards, fingers pointing down & relax the elbows) and was asked to hold it in that position for a minute. I could do that quite easily - she said i didn't have carpel tunnel. Give that a go - if it is uncomfortable/painful for you - definitely get checked out specifically for carpal tunnel - or get it checked out anyway!

I've been taking 1 curcumin at night,@kmakm ..... tho it has coincided with 'coming off prednisone' after the Uke Festival .... so I not sure if it was the residual effect of the prednisone or curcumin that was helping keep the pain away!! What strength are your tabs? Mine is 60mg. Do you take them more than once a day? As I type, the hands (left in particular) have gone stiff again, so I think it was the prednisone helping.

I am off to Sydney on Sunday for my 'actual' 1st year review with the surgeon on Monday!! (After my major stuff in dates last month! DUH!) I am typing up a list of things to put past him, including the use of prednisone 'on & off' to control my hand/thumb pain. My hands are vital for my quality of life & I am NOT enjoying this disability. BOTH my passions (uke playing & fishing) are controlled by my hands & so I am not happy, Jan!

I am off to South West Rocks today to catch up with my kayaking buddy who was diagnosed with bone mets the same day that I was diagnosed with my BC. I was hoping to spend Thur/Fri up there with him (along with hubby), but the big cyclone has prevented that, as it is about to hit the Coffs Coast today or tomorrow. Grant is still getting out there on the ocean chasing marlin, snapper, cobia & jewfish ..... a bunch of his kayaking buddies have donated $$ to buy a special electric motor that suits kayaks, to save his strength out on the water, to enable him to keep on doing what he loves, for as long as he can. He was given it on the weekend & was absolutely gobsmacked. He initially had chemo and hormone tablets but is now on nothing - sadly, it is now a waiting game :( His wife is also a member of my uke group! Both are the most lovely people.

Have a great weekend, ladies xxx

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After a break, Letrozole, continued...

328 Replies

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