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

Sandyr
Member
7 years ago
I have been on Letrozole since November 18, I have been the same as everybody as far as sore joints and dryness, but just the last 5 days and whose counting I have been able to do a lot more,And I feel good," touch wood" still got the dryness but I can cope with that.maybe there is a light at the end of the dark tunnel
arpie
Member
7 years ago
Hi @Artferret - so far, so good, but I've only been on it for 4 weeks so far, so possibly still a tad early to say 'YAY!!! If it stays like this, I will happily remain on it for as long as it takes. (It took 6 months for the Exemestane to become too painful.)

My hands (and particularly left thumb) are still sore but my 'overall body pain' isn't as bad as it has been on the previous tablets. However, I AM taking medicinal cannabis oil just now as well, so I am sure that has been helping too. Particularly with my sleep!

Fishing has been a tad slow - but I still just love getting out there, communing with nature xx

OMG! I am so glad we were in Thredbo a few weeks ago & not now - there is BIG snow down there just now, I believe!!
Artferret
Member
7 years ago
@arpie want to pick your brains on anastrozole
I ended up taking myself off letrozole 4 days before i was due to start my 'holiday' as i was in so much shoulder and neck pain. So far on day 3 my right hip has more mobility and my elbows are no longer sore. How's the anastrozole going? Is it much different from letrozole side effect wise or is it too early to tell? I'm still considering swapping to it but not sure whether I'd be just swapping one set of side effects for another and be no better off. Hope the fishing has been good. We've had 50cms of snow! Yippee!
SoldierCrab
Member
7 years ago
Ah Zoffiel you do as I do ... rural supply store 20kgs lasts me about 6mths with 2 cups in each bath (average 4 baths per week) and I recycle the water to the roses then as I know they love it and we are in drought still rain has been this missing item on our weather watch....

Yep kezmusc the shit sticks no matter what.

Hugs to all
kezmusc
Member
7 years ago
Thank you @SoldierCrab, I had just been wondering. Seems it sicks like shit no matter which way it goes.
xoxoxox,
@kmakm. Glad the magnesium worked a bit lovely.

For what it's worth today is two years for me since the end of chemo. I am celebrating by cutting and barking some logs for fence rails, yay. My exciting life huh LOL I hate using the bloody chain saw, scares the heck out of me. Maybe I need some lessons @Zoffiel.

Hugs to all.
xoxoxo
Zoffiel
Member
7 years ago
I buy 20kg bags of Epsom salts from the rural supply store for $15. It's a bit coarser than the supermarket version, but exactly the same chemical. In the bath, on the garden....bargain.
Sister
Member
7 years ago
Good to hear @kmakm. I will wait with baited breath to hear how you get on with your doc about the CBD Oil but do ask about the prednisolone as I'm sure that it will take time for the paperwork to process. I was on 25mg once a day for 7 days.
kmakm
Member
7 years ago
An hour and a half in a magnesium flakes bath has helped (got a big bucket from Costco for $15). Of all the things I tried today this was the best. Recommended!
Annie_C
Member
7 years ago
@iserbrown
Thankyou for your nearly winter wishes. Sometimes I long to be COLD without the use of an airconditioner!

The Biggest Morning Tea is a great initiative, however it does remind us of our BC time. As time goes on I am sure that I will be able to once again organise or attend.

Living in a small town of less than 3,000 tends to make everyone in town aware who has been diagnosed with cancer and to a large extent it makes for a difficult time in moving on or coping. Something to do with the endless questions and advice and our often and frequent absences from town.

The comment was actually said by a longtime "friend" who is part of "The Tuesday Ladies Who Coffee". We have been meeting every Tuesday for over 10 years. The coffee and gossip mornings are good for my soul, however I never expected to be held as a "cancer battler".

I am lucky in that I live some 10kms out of town on a small acreage lot. My nearest neighbours are 5 acres away and we are all of the mindset that we prefer our privacy. We must do as we live in splendid isolation. As I am fond of saying, "if it doesn't happen inside my gate, I don't need to know about it".

I will admit that I find events such as The Biggest Morning Tea and the various adverts on TV for cancer fundraising or how to prevent cancer, difficult.
iserbrown
Member
7 years ago
Cooler Melbourne, nearly winter wishes to you @"Annie C"

Sad isn't it that the Biggest Morning tea, a great initiative, cuts deep for us who are battling through treatment and or trying to move on with the everyday!

Just reading some recent comments of the forum highlights it!

Grateful for the initiative but avoid at all costs as coping is personal. Sorry to read the token comment and hope that you find comfort to know that you're not alone in your feelings.

Yeah I know your winter is very different to ours but what we can say we've had a beautiful autumn

Take care xx