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
- I have a friend who uses it for her knees. I'll check out where she gets it. Actually, I'm going to my GP this morning; I'll ask him about the legality in Qld . I know my friend got it at the Woodford Festival (!!!).
- Well, the conversation was that it was helping with aches and pains from treatment where other meds were not and that it was helping with sleep. I don't know what the situation is with prescribing in Victoria (it appears to be very piecemeal and a bit of a furphy regarding being legalised) but definitely worth the conversation with your onc.
- @Sister Really? As in it helps? Universally or just some people? My joint pain has been the worst it's ever been today. Painkillers helped but not enough. It's very very dispiriting.
- Recent conversation on bc fb group in Adelaide about cannabis oil for aches.
- Tagged for @"Bon Bon"
- Thank you @tigerbeth. Frankly I'm jealous! Maybe some sunshine and warmer spring weather will help. K xox
- As of yesterday I am on a Tamoxifen holiday for a month. My script runs out a month before I see the oncologist for review and he is going to put me on Femara then. He wanted to do it last year but I opted to struggle on with the Tamoxifen for another year as I wasn't keen on bone troubles with the AI. In view of those doing tamoxifen then AI having far better results I will go on it this year.
I could go off Tamoxifen during October but there are things I want to do during Sept, like get a brain back to do our taxes, attend a concert with a romantic nite at a motel overlooking Brisbane city at the end of Sept. Perhaps I will get really lucky and this Tinnitus will go away as well, and my receding toenails and red toes?
An interesting thing about my so called SVT heart troubles whereby the doc said take pills or get a pace maker. I have weaned myself off of the pills and rarely do I have to take one during palpitations at all. I just don't seem to get them much any more. Perhaps the heart thing was just menopause/tamoxifen and the tooth infection and antibiotics I was on at the time of the SVT attack? Doctors don't know everything. - Interesting to read the difference in advice. My onc told me at the first review 2 weeks (I think) post-chemo that I could start the Letrozole as soon as I felt that I was ready but that he would prefer me to be on it sooner rather than later and that starting before or during rads would be fine. I'm guessing that a strong OR+ path result has something to do with that. But I do get the issue about confusion of symptoms. I've still got stuff going on around chemo and now possibly with rads as well - who knows what's related to Letrozole?
- @kmakm oh Kate I so hope they can sort something out for you regarding the aches & pains . Awful to deal with on a daily basis .
I know how awful my aches & pains were before BC ,very depressing , anti inflammatory meds seemed to help .
after 6 weeks on Femara I am more than lucky to have had no obvious side effects other than a few hot flushes ! This surprises me greatly given my already aching body prior to bc.
Its my observation (what do I know !) that the ladies that have had chemo tend to suffer more from the Letrozole.
May be because the bodies are not in a state of normalcy when the drugs are started ! My med onc told me not to start them straight after radiation as he didn't want the side effects from either treatments getting confused , so you could tell what was causing what . Fully understand that this does not apply in all cases & others are suffering just as badly without having had chemo.
i find it depressing that I seem to have been taking them forever & it's only been 6 weeks !! 5 years seems to be intolerable 10 years a mind f*** !!! I hate taking pills ......... But will do what I have to do .
Happy Sunday ladies :) Happy Father's Day guys :) - Day before rads - I'm not taking my Letrozole today. The oncologist told me to stop it right before rads, so I'm cheating by a day.
On the positive side - I might be imagining it, but I think my toes are less numb this morning. Fingers still like permanent mini-vibrators on sticks.
