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
- Kmakm one step at a time girl ....sleep is the important one as we can do anything if we get enough sleep
- Will do @SoldierCrab, when I'm ready to grapple with it (will I need a grappling hook?!). Working on the sleep problem at the moment and don't think I can handle anything else at the moment.
- LMK74 Sister and Kmakm if you are not members join the Lets talk about Vaginas groups there is some really good posts in there about VA and dryness etc.
- @kezmusc Hey Kezza, yep, they are the absolute pits. My mother was put into menopause by breast cancer chemo and still gets them at 83.
The ones I hate the most are the ones that come with nausea, which precedes them so I know that as well as feeling like I'm going to throw up, in a minute I'm going to be sweaty and boiling. Sigh.
I can't work out the triggers either. Sometimes a hot drink, but sometimes not. Sometimes a hot stove, but sometimes not.
I know I have to put up with it, and hope that they eventually subside. It's worth it to cut down my chances of a recurrence. But it's psychologically challenging to come to terms with the currently quite sharp reduction in the quality of my life compared with what it was eight months ago. I'll adjust but it's going to take time. - @LMK74 Oh that's just ghastly, I am so sorry this is happening to you. I do not have incontinence issues (at this stage anyway) but I can feel every part of me drying like a botrytis riesling grape dangling on a vine at the end of a long hot summer. Upgrading my moisturiser to the heavy duty stuff is on my to do list when my current tube runs out...
- Hey @Kmakm. The hot flushes are the pitts. Mine have returned all beit nowhere near the intensity of round 1 on HT. But that was not too long after chemo so double whammy.
The first break I had off the drugs (about 4 months into it) really took the extreme intensity and horrible sweats out of them within about week. They were still there but not making me throw up,cry or lasting 10-15 minutes..
The 2nd break lessened them again and the 3rd one stopped them all together for a time.
I am not suggesting that anyone else does this but there was no way I could continue with how they were coupled with everything else that goes along with it.
I get about 10 small ones a day at the moment. Most disappointing after a few weeks with none. They feel like a bit of a combination of prickly heat, car sickness and vertigo. Nice huh? Only lasting a couple of minutes thankfully but seem to be more frequent at work.
I have been unable to pinpoint the triggers, it can be anything from walking up a hill to bending over to pick something up, caffeine sometimes but not others, the first glass of red wine (notice I say first lol) sometimes but not always, cooking over heat blah blah blah nothing consistent. Even turning around too fast will do it. I gave up trying to work it out,
I carry a can of dove deodorant in my bag everywhere and as soon as I feel the prickles I spray down the front and back of my shirt. It seems to help tame them a bit. I leave the fan on low at night even if it's freezing and adjust the blankets accordingly. The circulation of air seems to help somewhat.
I have tried the sleep eazy tablets again with some success but it takes three of them to do it.
I feel for you lovely. xoxoxo - The dryness in the nether regions is unbelievable. I'm on arimadex and zoladex. I don't have a partner so sex is not an issue, but it is horrible. I started on arimadex in December and I swear the last month my joint stiffness has increased ten fold. Also add urinary incontinence as well and I really feel like a grandma at 44. Anyone else having issues with not being able to hold your pee. This shit sucks.
- Thank you @Romla. I have discussed these with my old oncologist and my GP. I will be discussing again with my new onc when I get one. As advised, the first thing I'm going to try is to increase my desfenlafaxine. Just going to let my melatonin experiment to run a bit first. I will read and absorb your info so I can sound informed when next I meet my doctors!
- I've posted to the vagina group!
- @kmakm look under non hormonal medications.
