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 - True - just can't help myself :) Julie
- @Harvey1903 Some people have no trouble at all! Cross the bridges when you get to them hun. K xox
- Hi - ok now you have got me really scared! - off next week to Peter Mac for post op checkup and to start hormone therapy. Nothing has been mentioned yet as to what I will be taking, so just a bit of infomation gathering will be needed before they start suggesting stuff. ;)
- @kezmusc I'd never want to sweetheart! :*
Bummer about the gingko brahmi thing. K xox - Ok. NO you can't get rid of me lol....., so the Ginko, Brahmi thing makes me nauseous. Grr
- @kezmusc @"Kiwi Angel" @Romla It's exactly why I'm trying different things one at a time, I don't want to waste money on pricey pee. I've got ten years to muck about with this so why not? Well actually nine years and ten months now, not that I'm counting or anything...
And yeah Kezza, get your own discussion why dontcha?! :p - @kezmusc I hope the joint pain isn’t coming for me in a few weeks. Already have some with arthritis. I take vitamin D as prescribed by my oncologist, aged garlic for blood pressure and heart health and curcumin for joints. I have read extensively that if u aren’t deficient in anything it’s a waste to time taking vitamins and I always check in the herbs app that they aren’t going to interfere with any drugs I’m taking.
- Sorry to keep gatecrashing your Letrozole thread with Tamoxifen Tales @kmakm.
I just wonder whether any of these supplements can compete with the hard core drugs. So many variables on what might do what and what can interfere with the drugs we are taking. Totally confused most of the time. Obviously everyone is different and so are the drugs that we each get prescribed. So hopefully something works better for you on Letrazole.
The first 10 months on Tamox. I did glucosamine, magnesium, Calcium, D3 , Mega B something or other and krill oil. Oh and acupuncture. If something was going to work I would think this would be long enough for it to start doing it's thing. I continued the supplements through the breaks I have had on and off previously . I have yet to try the magnesium spray and it seems to get a pretty big wrap.
Agree with the expensive pee thing @Romla i think there is about $200 worth of supplements sitting on my kitchen bench that I'm no longer taking. You are absolutely right about the movement thing. I have very few problems with the pains during the day while I am moving. Seems to come on when I sit down to watch telly at night.
While the acupuncture was relaxing and I really enjoyed it, it did nothing for the pain and cost me about $500.
Heart palpitations stopped on the removal of the magnesium,calcium and D3 tablet. The last break I had off the drugs I ditched everything.
5 weeks back on and the pains and clicking joints are creeping back, somewhat less so far and limited to my lower back, left hip and ankles *which aren't particularly sore but now click like crazy.
Interestingly enough I have found that the bits that have been affected were the bits that were mildly dodgy or had been injured in the past. i.e I fell off a horse about 25 years ago and landed in a steel water trough on my back. Now that was spectacular!
I have had both ankles sprained badly in riding accidents about 20 years ago. These things havn't been a problem for a very long time until now and came up clean on the last bone scan. Hmmmm. Coincidence???? I only really just took notice of this recently.
Clinical experiment number 1. Add in ginko and brahmi and see if it has any effect on my brain.
xoxoxo
. - @Twiggyjumps have you caught up with the mskcc website/ Herbs app. It’s worth a look as I sometimes wonder if some supplements just make expensive pee.
I’m not a fan of analgesics either but have heard a lot of positives locally about Curcumin for joint pain.I have taken Krill Oil tablets daily for one year on recommendation of my oncologist but no idea if helping however been managing Ok on Letrozole. I did not have chemo however .
After 12 months on Letrozole I still say moving around has been the biggest help ie gentle exercise class twice weekly and daily one hour walk.On the occasional day I miss either I notice the difference in my joints.My kids were district basketballers and I learnt through them that you can walk thru discomfort and it can come good after a while - that has been true since I started Letrozole ie I can push thru it.
I don’t think the body adapts quickly to either supplements or Letrozole but it’s my experience that it does adapt in time - in my case I’d say 4 months or so. - @Twiggyjumps Wow Ann that's quite a list!
I'm working through the supplements to see if they have any effect on me. I started with Krill Oil which seemed to work well for a couple of weeks. But then the ankle pain went back to a full roar. Then I tried magnesium. It seemed to settle the ankles to a dull growl for about three weeks but they're shouting at me again.
I'm now wondering if this is a natural cycle of the joint pain or are the supplements working and then the joint pain increases or adjusts?
My oncologist said some of her patients reported success with Krill Oil and curcumin but she dismissed magnesium as being just for cramps. But too many people here rate it so I thought I'd try it.
I had a 45 minute foot and ankle massage last month and that really seemed to help. Might be time for another and to make it a minthly thing like you. Do you have a full body massage or focus on the area where it hurts?
I'm envious of your citrus! One day I'll plant some in my wreck of a garden. I love a mineral water with some fresh lemon or lime juice. K xox
