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
- When given to a woman for fertility reasons (usually someone who’s ovaries are not producing an egg), the Letrozole blocks the production of estrogen elsewhere in the body. When estrogen is blocked, the pituitary gland gets a message that it needs to produce follicle-stimulating hormone (FSH), which stimulates the ovary to produce an egg. Some women on letrozole actually release more than one egg because they produce more FSH while on letrozole than a woman produces when ovulating naturally.
Hope this is helpful @kmakm - Yes, excellent post @Deanne! Thank you for letting me know it happened to you.
@arpie The bit I don't get is how Letrozole is used in fertility treatment. I know I could Google and read but my brain can't take it at the moment! - WOW! Great post @Deanne
I reckon you need to print off @Deanne’s amazing reply above, @kmakm and take it to your Onc and discuss it ... as it was chemo that out you into menopause.
My uderstanding was Tamoxifen for pre menopausal women and Letrozole for post menopausal women, even tho my BS mentioned me going on Tamoxifen. (He isn’t an Onc!) - My understanding of Letrozole and other AI’s is that it stops the production of estrogen by other areas of the body(not the ovaries). There are actually different forms of estrogen produced in various areas of the body and Letrozole does nothing to stop the ovaries from producing their type of estrogen. That is why it is only given to post menopausal women.
Even though my body went into chemo induced menopause my ovaries started functioning again enough for periods to return around 18 months after my last chemo. My onc kept me on Tamoxifen because it does block all types of estrogen including the type produced by the ovaries, until we knew whether I would stay in menopause or not (I was 47 and premenopausal before chemo). When my ovaries started functioning again the decision was to remove them so I could safely change from Tamoxifen to Femara. I was 49 then. Have been on Femara for 3 years now. - Apparently the pituitary gland produces most of the hormones needed to stimulate the ovaries when you are on Letrozole. It also appears that there is a higher incidence of birth defects in any such pregnancy (you are advised not to go on Letrozole if you are pregnant). You can read more on ivf1.com/Letrozole for Infertility Treatment.
- WTF?? That sounds totally bizarre!
- @Sister I don't get it either!
- It seems (after a quick google) that apparently it has been used as a fertility drug. I'm a bit confused.
- @kmakm That's bizarre. I thought that Letrozole was supposed to shut all oestrogen production down so how can menstruation start again?
- Two weeks ago I had my annual blood test. In addition to the usual, because of Letrozole, I added a cholesterol test and at my oncologist's request, one to check FSH, LH & Oestradiol.
My bad cholesterol is up a bit but my good cholesterol is high, so the ratio is good. Interestingly (well to me anyway!) my hormone levels have moved a little in the direction of my ovaries working again. My onc says she regularly has women start to menstruate again on AIs. I'm nowhere near that but was wondering if that's happened to anyone here?
