Forum Discussion
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
- @"Kiwi Angel" Really??! I love having bare feet! Sleep naked too... ;)
- @kmakm I have always hated having bare feet so wear socks to bed all year round!!
- Mmm, food for thought @Zoffiel... I shall mull it over. Will the foot with the sock know if it's getting a real sock or a placebo sock?!
PS That man was a WUSS! I would have been intrigued B) - I only wear one sock to bed @kmakm.
I remember some bloke on an online dating site, a few years ago, asking what I wore to bed, thinking that was going to elicit some sort of titillating response. A beanie and one sock.
Seems that was a bit of a passion killer, but the sock keeps my 'bad' foot warm and gives the ''good" foot something fuzzy to cuddle up to while still having the option to freewheel it when the thermostat goes bonkers. The beanie, well, it's minus a gazillion degrees in my house most nights during winter and it's easier to don and discard a hat, in time with the aforementioned thermostat, than a doona. - It's a peculiar thing eh @Artferret? I just figure I've got 10 years on these things so I've got time to figure out what's right for me.
My oncologist said yesterday they were all the same but formulated differently and that sometimes, that's enough to alleviate symptoms. Interesting that Aromasin (exemestane) is a steroid. K xox - A friend of mine recently mentioned that she regularly took electrolytes to help with cramping and as that had been happening to me at that time i thought it was worth thinking about. I am at the gym 3 times a week and I make up a 600ml bottle of hydralyte to take with me and it disappears very quickly. But if i also have a diarrhea episode which for me can happen often due to my dodgy digestive system, thanks to Crohn's disease, my cramping would ramp up to unbearable levels. But since making sure to take gastrolyte/hydralyte after an episode i don't get the cramping. So i assumed that my electrolyte levels had dropped to a point because of my digestive system going awol and was losing more fluid. I figure if it works do it. Just be aware that anastrozole is similar in make up to letrozole but exemestane is steroid based. I was talking to my Onco about this last time because of my cholesterol levels but as they have rectified themselves through diet and exercise I'm sticking with the letrozole. Better the devil you know...sort of...
- Brave girl @kmakm it's tough for a while - change AI if it doesn't come good by all means. xo
- All noted - onc is going to discuss hormone therapy with me at next appointment (the day I start rads!). I know I'll be AI of some description but that's all I know at this stage. I did say to him that I needed to get my head past chemo first before thinking about what's to come.
- @Romla @"Kiwi Angel" I saw the oncologist on Wednesday and described to her what was happening. It was the first time I'd seen her since starting on the AI. She said that my side effects were definitely in the territory of looking at an alternative. However I've noticed that for a lot of women they do settle down, so I said I wanted to plough on for six months. On the other hand, I noticed @Artferret commenting elsewhere that her side effects had got worse over nine months. We're all different, so I'm sucking it and seeing.
I don't know that I could face socks in bed @Romla! I'm pretty active all day, up and down, in and out. I think wearing socks would make me too hot and give me bad dreams. I'm having enough of those already!
My face fur is not something I'm happy about either, but I'll give it a bit longer as well. K xox - The sharing of info like this is so helpful @kmakm. I was on Tamoxifen for the first 2 years and then swapped to Femara after having my ovaries removed. I had almost no noticeable side effects on Tamoxifen (except for mood swings my husband will tell you ;) ).
But Femara was a bit tough to begin with. I have now been on it for 21/2 years. Like you my oncologist has said 10 years all up is the likely path for current recommendations. That means 51/2 more to go. :#
Experimenting with different supplements is a very methodical and thorough way to go. While some things appear to work for others it is a bit of trial and error as to what cocktail works best for you. My osteopath told me that in her experience most people have a bit of an inflammatory response which seems to settle in time. I found it seemed to hit me about 1 month into taking Femara.
I now take Curcumin, high strength fish oil and magnesium. That seems the best for my aches and pain type symptoms. My 2 other side effects have been bone loss and vaginal atrophy. The weightlifting is curbing and reversing the bone loss and I am managing the other with the help of my gynaecologist.
I do feel very high maintenance these days! :D
I hope that you work out what works best for you and can manage a decent quality of life on it. That is what we all want. Take care. xxx
