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

Zoffiel
Member
7 years ago
@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 resort

A 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
kmakm
Member
7 years ago
@Josephine66 Noted!
tigerbeth
Member
7 years ago
@kmakm I forgot that one ! having trouble at the loo too !
Definitely retirement on the cards , I wont go back to my job , I looked at 2 jobs the other day that I should be able to do standing on my head , but the thought of starting something new was overwhelming !! My ex boss/friend told me today that she feels the same (and she hasn't been though this BC shit ) ,think our job sucked the life out of us !!
Josephine66
Member
7 years ago
@kmakm as if you haven't got enough to deal with!

A trick (may or may not work) is to keep drinking water in the morning for as long as you can hold your bladder. Puts pressure on the bowel and gets things moving.
kmakm
Member
7 years ago
@Flaneuse Is not taking it something you're seriously considering?
kmakm
Member
7 years ago
@tigerbeth Yes it's weird how some days the pain is worse than others. I can find no rhyme or reason to the variations.

So far no return of the thumb pain. The hands are a little sore, but barely noticeable. Long may it stay away!

How workable is the retirement option Beth?

K xox
kmakm
Member
7 years ago
Never apologise to me about a rant @Josephine66...

Now that I'm back on Letrozole the constipation has returned because all the moisture is being sucked from my body. Mucosal dryness. I bloody bled from my rear end while going to the loo this morning so hard were my 'motions'...

I have all the time in the world for an AI rant! K xox
tigerbeth
Member
7 years ago
Luckily my side effects are not as bad as some of you are suffering .However I am gradually having them , they come & go but i'm really tired a lot , have also lost my words & memory at times @kmakm so much so that the thought of going back to work makes me blanch :# Left thumb bad today , seems no rhyme or reason for when the pain strikes !!
Interesting @Flaneuse that you mention swollen achilles ,I have that too , not sure if its related too the letrozole , physio has given me exercises which help .
Ah the joy !!!!
Flaneuse
Member
7 years ago
@Josephine66 Stuff the "be grateful" mantra. We have a lot to feel disappointed about, to say the least. Yep, that woman who has snuck into my bathroom in front of the mirror, how the hell did she get in here? I'm also fed up with people telling me, "You LOOK great!"

Shall see my medical oncologist in last week of this month and shall discuss Letrozole. She didn't ever give me a percentage. That will be a question. Side-effects on top of/ combined with all the other things: lymphedema, cellulitis, unsuccessful knee replacement, torn and swollen Achilles, painful/uncomfortable expander and mesh, sodium deficiency adding to fatigue and weakness ... whinge, whine, moan ...

The big blessing is swimming again. Yay!
Josephine66
Member
7 years ago
@arpie @kmakm I'm seriously looking at dumping hormone therapy and focusing on being the healthiest version of me. I do fear though the Letrozole has flicked a switch and turned on side effects that may linger for some time.
Since diagnosis I've been taking so many supplements plus started acupuncture post radiotherapy, exercised as much as I can including weight training program for lymphedema (yep have that too).
Perhaps side effects would be worse without all that, who knows?

In addition to the awful side effects (I'm sure I'm not alone here) we also get to feel miserable about the "new me". Weight gain, hating the new hair do and clothes not cut for flat chests. (No reconstruction as yet) I have no idea who that woman is in my bathroom mirror every morning.

But to everyone else we look great and must be feeling good and moving on. Sorry but some days that feels like "be grateful you made it, take your meds and don't complain"

Oops I started ranting. Sorry 😞

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After a break, Letrozole, continued...

328 Replies

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