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
- @Josephine66 Hot flushes 24 hours here. Sucks eh? Hang in there. Let's hope it settles. Eyes on the prize. K xox
- @kmakm I think for overall health and recovery complementary medicines are helping. And I feel current symptoms would be much worse without them. the couple of weeks leading up to rads I was feeling the best I had since diagnosis last October. Today is day 21 on letrozole and hot flushes are getting worse, now having them through the night as well as the day. Joint pain makes it difficult to move morning & night and if ive been sitting for more than an hour. Before BC I'd never had surgery or any medications. Chemo & radiotherapy was a big shock to my body and I believe complementary medicine aided my recovery. Moving forward all my symptoms would probably be much without complementary medicine and im not prepared to stop just to find out. I think its important to find an alternative therapist willing to work with mainstream medicine that you trust.
- @Josephine66 Thanks for that. I'm going to give acupuncture next. And once I've finished my bottle of magnesium it'll be on to the curcumin experiment! Do you think your complementary medicine efforts are helping? K xox
- @kmakm good to hear your side effects are reducing. Youve been on a rough road settling into letrozole. Im day 16 on letrozole now and it feels like its getting a little worse everyday. Will give it a few more weeks before i talk to oncologist about options. In the meantime trying to build resistance with exercise and healthy eating plus acupuncture and a bucket load of supplements and anti inflams.
- @Zoffiel Wise as always.
- People struggling through the process are precisely the ones who should be driving these conversations. We are all under the care of a multitude of health professionals, it is finding commonality with others who are in a similar situation that gives us perspective. Not everyone realises there is more than one way to skin a cat, information is power and the most powerful thing we can do is ask informed questions.
Not everyone is as new or as old as they seem. Mxx - Both my breast surgeon and oncologist told me that Letrozole was the AI that supressed the most oestrogen. I was curious so did some research. It wasn't hard to find articles referencing this. Attached two links below. Both my doctors also said the differences were considered very small.
There are many factors influencing what drugs we are prescribed. Age, how developed our cancer was, weight, tolerance and most of all how oestrogen receptor positive our tumours were. Mine was highly ER+, so I am interested to persevere with Letrozole for as long as I can manage. What drugs we take is a matter for each individual to discuss with their doctor.
So let me rephrase, Letrozole is the best one for me.
https://www.futuremedicine.com/doi/full/10.2217/fon-2017-0228
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068499/
