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 so exciting to have travel plans! And a bonus hormone holiday :D
My oncologist says the same as yours regarding swapping to Tamoxifen rather than changing type of AI - where side effects are an issue. Tamoxifen is not as effective for post menopausal women but better than not taking anything. - @kmakm I'm SO thrilled to hear of your plans to go to India. I know how special it is for you. I hope that little flame grows and grows. xox
- So yesterday I met my new oncologist. And I'm happy to say it was a really good appointment! I liked her, a lot. It's not that I didn't like my last one, she was very nice, it's just that we didn't click. For reasons I don't understand, it seems I need to 'click' with my clinicians to feel properly supported.
She was about 75% on the same page as the old one. She agreed with what my BS said a couple of weeks ago, let's get me to five years on hormone therapy and then review based on the studies that have been published by then.
One of the areas where she differed from the old onc was that rather than change between the AIs, she favours swapping to Tamoxifen. However she concurred with me about giving it six months, it may settle down.
The statement she made that had the most impact was "It will get better". I didn't realise how much I needed to hear a doctor say that. I know so many of you lovely folk have said that to me a lot, but somehow it was different when the oncologist said it! I feel a bit of a dill, but there we are. In the last week the joint pain in my right thumb has worsened, become genuinely intrusive and now requires pretty much constant pain relief. I need hope.
She also gave me permission to take a drug holiday at the end of the year when I'm... going to India! The place that gives me the most joy faded into darkness of BC. It's been where I've gone in my head in the darkest of times but BC put it out of my mental reach. However two months ago I thought about it and there was the tiniest spark of a thrill. I've nurtured the flame and while it's not yet at its normal strength, it was enough to pull the trigger on a trip before Christmas. I'm a bit nervous about my stamina but we're setting a gentle pace so I should be able to cope OK. Five mums are going with five daughters/niece. My friend (with whom I always travel to India, and with whom I escort small groups) and I are doing all the organising for our mates & their girls, who are all 9 - 11years old. It should be lots of fun and a restorative tonic for my soul. And now, without Letrozole!
So, like @Sarnicad the other day, a 'good' doctors' appointment! - @Flaneuse - Please Check out the whole video - some people go from having to take 10 manmade pain killers to just using the cannabis oil - with an almost immediate increase in quality of life & ability to eat & maintain body weight. It is a remarkable thing - considering a lot of the side effects of the tablets - constipation & loss of appetite being two of them.
- My GP confirmed this morning that cannabis oil is illegal in Qld.
When I was starting chemo, I asked my oncologist about medical marijhuana for nausea. She said she'd had experience of it when she worked in Canada, but was confident that the anti-nausea drugs used here are as good. And she said that in Canada people who had not smoked marijhuana socially in the past had problems with some side-effects. - FOUND IT!! This is a MUST WATCH. I'll put it into it's own thread, I reckon! ;)
https://www.youtube.com/watch?v=cmEjlMdLi5w - I think that's been one if the issues holding things back - it doesn't work for everyone - but then, what does?
- It appears to be of tremendous help for those with extreme aches & pains (particularly those with Mets and bone pain) and a variety of children's cancers/tumours and those with seizures - and it is disgusting that it is not more freely available to those in need. It gives at least a modicum of quality of life as their disease progresses.I've just watched a very moving documentary that went to air in Dec last year on SBS - and the then NSW Premier Mike Baird set about getting it legalised ( and other states followed suit - but it is still very difficult to access legally, even now!) some years later.
A must read:
http://www.dansstory.com.au
This was the documentary - but I can't find it 'online' anywhere. It was just brilliant.
A Life of its Own: The Truth about Medical Marijuana
I have buddies who access it 'under the counter' - and some even make their own. There is a machine that you can buy that basically 'does all the work for you', so long as you have access to the raw materials (some grow their own & others have a friendly 'grower'.) My sister has some legally - and I tried a couple of drops when she visited earlier in the year, but it did nothing for me. :( Maybe it is a cumulative thing?
I've found this one - but haven't watched it yet ....
https://iview.abc.net.au/show/catalyst/series/17/video/SC1502H038S00
Some good info here:
http://www.abc.net.au/news/2017-04-13/medicinal-cannabis-demand-driving-unwarranted-black-market/8443274
Lots of bits to read here too:
sbs on demand cannabis oil - Thank you @Vangirl
- @kmakm I looked into access to medical cannabis when on chemo and it seemed quite complicated so I didn't bother but it seems possible.
Here's the information online:
https://www2.health.vic.gov.au/public-health/drugs-and-poisons/medicinal-cannabis/access
May be worth asking your new oncologist?
