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...

Kiwi_Angel
Member
7 years ago
@kmakm I find tamoxifen not that bad compared to some. Hot flushes, a little joint pain and a little brain fog and water retention but that is about it.
Sandyr
Member
7 years ago
I started taking letrozole on the 10dec,so far the only thing is I get sore feet and a bit tired but I am feeling ok 'touch wood'.i was on Anastrozole for 9months drained the life out of me.
kmakm
Member
7 years ago
@Sandyr Amazing how different the responses are eh? We're such varied creatures.
kmakm
Member
7 years ago
@"Kiwi Angel" I know that some people find it a breeze. I suppose I can only try.
arpie
Member
7 years ago
All the best, @kmakm - I take all my meds at night - to work their magic as I sleep. (Particularly anti inflams!)

It will be interesting to see if there is a difference this time round! Fingers crossed! xx

What strength Curcumin were you looking at?
Sandyr
Member
7 years ago
Fingers crossed , this time around .will try the cur cumin as well
Patti_J
Member
7 years ago
I know where you are coming from @kmakm as far as the Letrozole goes. I have been feeling very weepy the last few days because of the Letrozole. I am sick of having toxic chemicals in my body. I took Tamoxifen for five years. I put on 10kg., which for me was a lot. I lost weight as soon as I stopped taking it.
I would prefer to be on chemo.
The alternative is not worth thinking about however.
iserbrown
Member
7 years ago
@pattij
I did 2 plus years on Tamoxifen and had tamoxifen induced problems which sent me to a Gynaecology Oncologist and two operations later it was decided that the Medical Oncologist take me off Tamoxifen and put me on Letrozole (Femara). Well I did 6 months on Letrozole, disturbed sleep, aching bones and weight gain. I had a 3 month review and he said if my body was going to adjust it needed to be on it for 6 months and it didn't! He said normally the adjustment is obvious in the first month however I persevered. Now I am on Aromasin but since then I have had to go on strong painkillers because of the bone pain and other non-related things from BC (at least I think that is the case) x-rays will tell the tale and I will be reviewed again in April by the Medical Oncologist and October by the Gynaecology Oncologist with the obligatory vaginal ultrasound. In the meantime the GP has ordered x-rays, painkillers and keeping me sane!

I still keep saying to myself how did I get into this predicament but although those thoughts come and go they don't stay long as there's no point dwelling. My acceptance came at the start. I prefer to try and work out how to make the body tick better! It's the damn side effects, pain, weight gain that is more tiring than the actual BC diagnosis.

I did the Ex-med Cancer program and that was very beneficial.

Long story short is you don't have to endure forever on a medication. They will change you as this is for the long haul and to find something that the body adjusts to. We are all different in the way our bodies metabolise and react and sometimes the time of day that we take the medication can help but geez it's a learning curve. Sorry if this has turned into a bit of a whinge.

Hope you find your happy medium with the pills and each day gets better

Best wishes to everyone else trying to adjust and bloody fantastic to those of you that have sailed through unscathed

Take care
Patti_J
Member
7 years ago
Thanks @iserbrown. Any medication should give us quality of life.
I see my oncologist in two weeks time. She has been more concerned with the side effects of Palbociclib up to this point, which at the moment is low neutrophils.
kmakm
Member
7 years ago
@arpie I'm not sure yet as I haven't bought it. I did have a chat with the lovely Tom the Pharmacist, and he said I have to take the one which is most bio-available, as in, most easily absorbed by the human body. It is of course the most expensive one... The brand is BioCeuticals. I'll let you know if/when I start it.