Forum Discussion
Letrozole - Year 2
I'm six weeks into my second year of Letrozole. The good news is my hands have remained better since I took a one month break after six months. They still hurt, both bone and joint pain, especially with the cold weather, but they've never returned to the earlier level of pain.
My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender.
I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost.
So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance.
I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope.
For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one.
The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break.
My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero.
She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous!
Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered.
There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.
My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender.
I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost.
So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance.
I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope.
For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one.
The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break.
My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero.
She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous!
Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered.
There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.
71 Replies
- Hi @kamada, thanks for the tips on the fish oil. It's good to hear you're managing all that exercise - I've got better with this lately too and it makes such a difference, to my mood and just generally feeling better. Take care and good luck.
- Best wishes for your continued treatment with Letrozole. I am in my seventh year with it (I’m 74) and the two major side effects for me are bone thinning and vaginal atrophy. I too have taken fish oil for my creaky knees for years and also take vitamin D and some calcium supplements. So far my hitherto excellent bone density has diminished but no osteoporosis so far. Vaginal dryness is not fun - mine started within 6 months of taking Letrozole so not just age related! My surgeon has satisfied my concerns about using oestrogen cream at my age (v small doses, smaller than recommended) and it has helped a lot. Have never had joint pain (creaky but not sore knees predate bc!) but as turmeric has some anti-inflammatory properties, it could be useful if required. I agree, the inconveniences, so far, are still worth sticking with it. Given restrictions, I am being much more regular about doing yoga at home and walking a specific number of steps every day. Might as well use the time to establish new good habits! Best wishes.
- @TaraV Hi there! I have just started letrozole after chemo, radiation and am still having herceptin (not her prince as predictive text just suggested - though I might have enjoyed him more 😂). Anyway have no side effects so far but very early days. However when discussing letrozole with my onc he said due to my age the side effects should be minimal and most likely bone thinning and\or joint stiffness and pain if anything (I am early seventies). He said he can help with any that occur so don’t hesitate to ask. What I thought might interest you is that he said fish\krill oil and turmeric can be helpful with the joint issues. No one else has mentioned turmeric here so thought I would throw it into the ring. Also I have taken fish oil before and very quickly moved to the odourless variety after regularly burping up the yukky aftertaste on the other kind. 🤮 I also found my tummy liked it better with food. Will keep my fingers crossed that neither of us suffer too badly from the hormone stage of our treatment. I figure that regardless of any shitty treatment side effects it is still heaps better than the alternative. That thought keeps me going when it gets a bit rough. Good luck! 😘
- @Sister I love these ideas of how to make exercise more immediately available wherever you are. And i also can benefit from the tip not to let the bad habits go on too long. But then, if I'm honest, they already have. I've never really been good at exercising consistently. I actually really enjoy it when i do it. When i was younger and had a different lifestyle i loved bush walking. But when i had a more demanding job in the city i rarely exercised apart from incidentally. And then I'd go on a burst and exercise more consistently for a few weeks or so and then it would fall away again. So i think it's going to be an ongoing thing for me to have to push myself to do. Still - all these tips help and i think that idea of making it very easy to exercise even in the living room or wherever is a good one. I've started doing that a bit - just standing up and doing a bit of stretching etc. It helps. I'd love to try and get a walk back into my day.
Thanks for your support and take care of yourself. - It is so hard with a small child. I know that was when my fitness went out of the window. I don't know what your local community is like (or how old your child is) but see if there is a local Music & Movement type group that you can go to (usually 30 minutes of singing Play School style songs and dancing). My local one closed down not long after my younger kids were old enough so I ended up starting my own - fantastic workout and the kids entertained. (Do your own at home if that suits) There may be other opportunities to exercise but it can be really difficult. I suspect that given the conversations with your husband and SIL, you may be reluctant to take time for yourself, but it is important and believe me, the longer you go the harder it will be. Parenting is a 2-way street in a couple and when there's another pressure (such as cancer) it may mean that the other person has to pick up the slack. But I know that has difficulties if you're already struggling. However, take it from me that the longer you go with a particular way, the harder it can be to change it. Your health and fitness is important in the long run for your family as well as yourself. If you are able to, get out for 30 minutes brisk walk first thing in the morning or in the afternoon while your child is otherwise occupied (and supervised). A few laps of the pool while your child is in swimming lessons. Get some small weights and chuck them in a cupboard in the lounge room (where your child can't get at them to hurt her/himself) and do some exercises in front of the telly. I know it's hard and even harder with the family pressure but it is so important. Take care.
- What an amazing lady, @romla!! If only I could be motivated to get out walking! :(
- @Romla and i hope you get back to it soon.
- @Romla - it's great you've found something you like so much and that really helps physically and mentally, too.
- @TaraV my medical oncologist recommended it for joint pain. It must be very difficult to find a corner in your day with a young child .Maybe family/ friends might help or even if viable before child is awake or after they are asleep ?
I was embarrassed into walking by a breast cancer lady in her 70s tbh. I joined a local support group and met a remarkable little country lady. Twenty years earlier on a trip around Australia she found a cancerous lump in her breast in Mackay Qld.She had promised her daughter in Adelaide to return with her husband for her 21st which birthdate was also shared by her husband. She took her husband to the airport then drove to the hospital and had a mastectomy.She stayed in hospital until Friday and then had to leave so returned to the caravan park where kind fellow travellers organised basic foodstuffs and kept an eye until her husband returned a couple of days later. She told me she walks every morning at 5 am regardless of the weather and was still cancer free 20 years later.I took up daily walking and was winter ( not at 5 am though) wet and cold and I believe it helped a lot with joint pain as my body adjusted to Letrozole gradually over a few months.It also helped with my mental/ emotional state as frightening time first year after diagnosis.Unfortunately currently am struggling with plantar fasciitis from walking long distance in a Cairns in attractive but unsupportive footwear.If you can learn from my stupidity by choosing appropriate walking footwear that would be a blessing.I hope to be back walking ASAP.I found I like walking much to my surprise basically I listen to music and think about things as I go along. - @TaraV
Goodness you have a lot going on emotionally as well as the BC itself.
Easier said than done I know but try and set yourself one small task at a time.
As you say you are doing squats and lunges in the house. Perhaps make a note to yourself to do say 10 of each per day and build it up over a 4 week period to a number that you are comfortable with. Once you have achieved that then look at whether the walk with the pram can work for you and your little one (sorry don't know if boy or girl). Or another exercise like say a Bridge exercise, will help with the pelvic floor or if there's steps around a step exercise.
As you start to feel a little better then you may find the emotional crap isn't sitting so heavy! Sometimes they are throw away lines and other times it is an opinion based on perception and not knowing your reality so you just need to take a deep breath and say hey this is me I have some medical challenges but I am doing my best emotionally and physically to deal with same.
Personally I had excellent and still do, support from my hubby; he is the sounding board and whenever I would say I ran into so and so and the conversation was more of a competition about who had more treatment or whatever to do with BC he would just say I hope you just smiled and walked away!
It is very individual and your body is giving you challenges with Letrozole at present however if it becomes too unbearable there are other options that the Oncologist may consider.
Come on here as often as you can as we all understand and hopefully you will get better with it all and hopefully it is just a challenge that you can conquer. It's about coping mechanisms and strategies.
Take care and best wishes
