Forum Discussion
kmakm
8 years agoMember
Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18.
My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time.
Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray!
Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat!
I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps.
I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on!
Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know.
My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well!
My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time.
Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray!
Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat!
I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps.
I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on!
Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know.
My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well!
My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
373 Replies
- kezmuscMemberThe word spin thing is quite odd. I went to say to my husband last night "you did so" to something he says he didn't do. Somewhere in my scrabble brain it got confused between "you did so" and "you did too" and came out "you did soup" hehehehe it stopped the argument as we both burst in to laughter.
@Sister it does feel a bit like dementia or alzheimers would at times I am sure. The blank fog of what the hell was I going to say or do. I will say though the ginko, brahmi supplement does seem to be helping a bit with the fogginess, not the word thing though.
Might be worth a try. It's the only thing I am taking and seemed to kick in after about a week. Make sure you take it with food though otherwise it makes you a little nauseous. (probably should have read the label first)
xoxoxo - kmakmMember@Vangirl Fingers crossed.
- SisterMemberI know what you mean about mental sharpness - I think mine is now the equivalent of a plastic disposable spoon! I can only blame PTSD and chemo - I couldn't sink any lower on Letrozole - it feels like early dementia, sometimes. Interestingly, the psych last week said she thought I was being too hard on myself. When I remonstrated, she said she thought I was struggling because I've been so high-functioning. Not sure if that's a good thing or not...or whether it helps.
- VangirlMemberHi @kmakm, according to the BCNA booklet about hormone therapy:
'A recent clinical trial found that women who were post-menopausal and who had taken tamoxifen, an aromatase inhibitor or both (one after the other) continuously for five years could safely take a three-month break from treatment each year for the next five years...'
Perhaps further research has been done since then about the viability of taking breaks during the first five years... - kmakmMember@kezmusc "Nuclear grade flushes". Both you and @Zoffiel have used that phrase. So perfect for what I'm experiencing multiple times a day at the moment. Especially the ones that come with needle sharp pricks from my fingers to above my elbows. Painful and deeply unpleasant.
I hate the loss of my brain acuity. I'm just not on top of everything like I used to be. My memory isn't as good, I reach for words that I then fail to find. My mind used to be a reasonably sharp all round kitchen utility knife. Now it's a blunt bread and butter knife.
"Depressive funks" tick, "anger" tick, "helpless" tick. Again last night I read yet another source of menopause management advice... I do eat incredibly healthily, I exercise regularly (20kms of walking in the last week), I've minimised alcohol and coffee intake, and don't eat highly spiced food very often at all. I don't think there's anything that can help me but I suppose I'll keep trying.
So yep, I feel bleak. The 10 year timeframe is too far for me to focus on, to aim for. I'm seeing my breast surgeon today to get a new oncologist (old one quit) and I'll talk to the new one about the possibility of building in a yearly break so I can mentally aim at something in the medium term. And maybe in time my body will adjust and I'll find it easier.
I read a study last night that said Letrozole was the drug that gets the best results of all the AIs. I want to stay on it if I can. I don't want this cancer f****r to come back and have to look back and regret not toughing it out. However I know I have to weigh up my quality of life issues as well.
Thank you for your empathy. It means a lot to me, it truly does. Again this forum delivers; at least I don't feel so alone. Thanks Kezza, hug received. Kate xox - kezmuscMemberHey @kmakm,
Gate crashing again. I know it's a different beast but being slammed into menopause through chemo and then having your hormones manipulated by drugs is in no way normal no matter which drug is doing it and I understand perfectly how you are feeling.
Your poor body is trying to recover from being poisoned and having its natural cycle of hormones stopped like hitting a brick wall. Especially when there was no sign of menopause before. Your body wasn't even thinking about it yet.
The worst thing about this compared to natural menopause I feel, is that you can't take anything to counteract some of the side effects like you could try in normality.. No HRT, no remifen, no promensil, no anything with phytoestrogens, no nothing because they just can't tell you if it is going to interfere with your meds or not. The feeling of "this is about as good as it's going to get and there is zilch I can do to help it" is overwhelming. Angry....absolutely. I suspect some is caused by what your body is going through and a lot at the situation of feeling completely helpless. Why should you feel so crap when before treatment you felt perfectly fine.
The nuclear grade flushes had pretty much settled to a dull murmur with me by the time I had finished radiation. (13 weeks post chemo) After four months on HT I was literally ready to jump off a bridge. There was no way I was going to be able to live like that. No sleep. Waking up sweating. Serious mood swings and depressive funks. Tripping out of bed because my hips had frozen up from lying still etc etc etc.. Not to mention the brain malfunction thing. It was starting to affect my work and I had spent a week in tears. F*&k this shit.
I had to go off it to see what would happen and I thought that a couple of weeks in the scope of 10 years really wasn't going to make that much difference. I s/w my onc and rad onc and they both agreed.
I know you want to stick the six months but maybe a little break might give your body a chance to level out and then reapproach. Each time I have had a break something has settled a bit.
That first three week break off it calmed the intensity of the flushes by half and all the side have gotten better and better each time I have a break.
I feel for you lovely.
Big hugs.....xoxoxoxoxo - arpieMemberSO Glad you found it, @Brenda5 After reading the first few pages, I realised that my symptoms and mood changes were totally within the ‘normal range’ ... I reckon the heart palpitations were about the only symptom I DIDN’T get!! That first chapter just about covered most of my problems. I picked different bits out of it but never read it in its entirety as I loaned it out and didn’t make a note of their name ... and it never boomerang’d! :(
It is a massive book ....you’ll have let me know what other bits you find interesting!! ;) - VangirlMemberTagged for @LorraineB
- ValerieLouiseMemberI'm also in the early days of Letrozole and extremely thankful for the observations of my oncologist who, in a forthright disclosure, warned me of the range of possible side effects. Due to lifelong physical disabilities including partial paralysis, I am no stranger to referred muscular and skeletal pain & at present really can't determine any significant change to the usual; perhaps that may come. My biggest challenge is how tired I am & how little exercise I seem to be able to do. It's frustrating because although my mobility is impaired, I have always worked hard at daily exercise to ensure I get around. Any suggestions on dealing not only with tiredness but exhaustion are welcome. Oh, and cheers to all from sunny Gold Coast !
- LMK74Member@"Annie C" you have a point lol.