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

kmakm
Member
7 years ago
Thank you @Blossom1961. K xox
Blossom1961
Member
7 years ago
Hi @kmakm CBD oil sounds like a good option. I just got out of bed with an annoying pain in my feet and ankles but it isn’t unbearable. Take yourself off to the doctor tomorrow and get it happening for you. In the meantime, I hope the drugs start taking effect for you so you can sleep. All the best lovely lady. Love Didi xxx
kmakm
Member
7 years ago
So much pain lately in my lower legs. Needing pain relief more frequently to sleep now. I get into bed and my knees, calves, ankles, feet and toes are all painful. I start shifting my legs around to stop the pain and can't stop moving. Can't find a comfortable position to arrange everything without something hurting.

Tonight my ankles and big toes are screaming. I've tried some Diclofenac but it's barely touched the pain, probably because I didn't take it soon enough. I'll take some paracetamol and hopefully that will help.

I'm also increasingly fatigued on Letrozole. I forced myself out for a walk today, which I really enjoyed, but the moment I stopped I felt the need to lie down. So heavy with exhaustion. Plus some low BP moments today. Sigh.

I'm ploughing on with acupuncture. I'll stay the course but if there's no substantial difference I can't see that I'll continue. Mind you, the thumb ball pain hasn't returned so that's still a win. It's quite hard work though, not comfortable and frequently painful.

I think my next stop is CBD oil/medical cannabis.

My determination to keep going with Letrozole is still strong, but gosh it's hard. 18 months of dealing with BC... And prior to that was four years of dealing with my sister's BC and it's ramifications. I'm so tired of this illness, all the people it kills, all the suffering. I know I'm one of the lucky ones, but geeze, I would have loved to be luckier.

Wouldn't it be nice to blot it all out for a while? Completely forget about it and not be reminded by anything. I think I get drug addicts for the first time in my life...

Big whinge I know! Thanks for letting me get it off my chest. K xox
kitkatb
Member
7 years ago
Cross fingers @Sister that it holds off for you and you get more pain free days. Would be interested to hear.

Hope you had a fantastic massage @kmakm enjoy the pampering

@Romla Have heard of that but never tried it. I can't believe how much I spend on medication each month even the femara is $ 32 a pop every 4 weeks. Bloody hell no wonder my pharmacist loves me. ;) xo
Sister
Member
7 years ago
Bugger!
kmakm
Member
7 years ago
Just arrived at the Think Pink Foundation to have a free hour long massage (one of three per annum, get on it Melbournians!). Got out of the car like the oldest of old ladies. Slower, stiffer and more hunched than my 84 year mother. Couldn't cross the road until there was a huge gap in the traffic as I was too slow (where's a Scout when you need one?!). #letrozolesucks
Sister
Member
7 years ago
Nothing at the moment @arpie. I go back to see him in a couple of weeks if I'm still suffering or cancel appointment if okay. I'm holding off on cancelling until I'm sure the relief is sticking.
Romla
Member
7 years ago
Just another suggestion that may help .Have also been using Dencorub arthritis ice therapy as well as ice packs on my tennis elbow.Wsa very sore middle of night and put the Dencorub on and worked quickly and well.Has good reviews online too.
arpie
Member
7 years ago
I think I will be getting my hands xrayed to get a pic 'as of now' - I have an X-ray from about 9 years ago to compare it with ..... I have a noticeable 'bump' on the bone at the base of my left thumb - a smaller bump on the RH one.

I had a steroid injection into the thumb in 2010 and it was supposed to last 3 months - but didn't last 3 weeks. Then it settled down all on it's own (after wearing a thumb splint to immobilise it during the day & night for a year) and it only flared up (but 10 times worse) on Letrozole & Exemestane.

I was also very impressed with the prednisone back in Feb - and wish they could sort out a dose that we could take on a more regular basis. Yours would be wearing off by now, @Sister ? Did you get some 'post tablet' relief as well as the 7 days on it?
Sister
Member
7 years ago
I didn't have an injection but went on 7 days of prednisolone (a cortisone steroid???) tablets. Result was nothing short of miraculous.

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After a break, Letrozole, continued...

328 Replies

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