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 K, thanks for the info, I was post menopause but still having hot sweats before I started this saga, will talk to the oncologist, it’s all getting me down, sure sucks x
- Hi @Jeanjeannie. I can't say if 'normal' but it equates with my experience. Under instruction from my oncologist I am having a two month break at the end of the year. This will enable us to determine what side effects are menopausal and what are Letrozole related. In my mind they're conflated because cancer put me into menopause. Where are you on that front?
Bloody sucks eh... K xox - On letrazole last 12 months, oncologist said thumbs might hurt. Yes, and every other joint in my body, sometimes shooting pain, then it stops. Wake every hour boiling hot, very depressed, is this normal?
- @Blossom1961 Funny!
I have pulled the pin on the acupuncture treatment. My perception is that for what I was paying, the benefit was not substantial enough to continue. I think it helped a little, especially in my hands, so I will observe over the next couple of months if they deteriorate, and return to focus on them should that happen.
Osteopathy is cheaper and provides more pain relief for me. At this stage anyway. It's also more enjoyable. The acupuncture was not relaxing for me. Bloody painful in fact! - @kmakm
- Hello @kmakm
Sending you a private message - @Sister Yes someone else has mentioned that to me. I haven't had time to do a hunt for it but I've been keeping an eye open for it. K xox
- I saw this come up on another feed - I can't find anything about whether there are any known contraindications.
https://medicalxpress.com/news/2019-06-tart-cherry-shown-decrease-joint.html
Also known as sour cherry...and is purported to help with sleep due to something with melatonin (I admit to having glossed over that bit).
By the way - not the same as unsweetened sweet cherry. The variety of cherries used are Montmorency. - It’s hard and it’s not fair. It’s also harder when the day to day takes so
much time and energy that the mental mining that often accompanies a major health or emotional issue (almost inevitable with both I would have thought) is just too hard to contemplate let alone do because it’s exhausting, you don’t know what the ramifications will be and you have RESPONSIBILITIES. All I can suggest is that you are very very kind to yourself. It’s not your fault. You didn’t create those circumstances. If crying for hours helps, then do it and don’t feel bad about it. Most of all, and I do have a slight glimmer of how difficult this may be, can you off load some of those responsibilities, for a while, so you can make time to deal with some of the business which may help to restore a sense of calm, if not optimism? Thinking of you. - @kmakm
do you think perhaps you are being too hard on yourself. There's lots of advice and reading out there but who fits precisely within the text book?
It's something that will come together for you eventually.
In the meantime make yourself a list whether it be mundane tasks or adventurous or volunteering at the Op Shop. Or maybe learning a new skill or hobby or getting a part time job as a check out chick or office work or a commitment to make a new dish once a week. It doesn't really matter what it is!
It's about finding something to focus on
You will get there
Deep breath
Take care
