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 again @kmakm @Romla
Just to get back to some of your earlier questions and prompts - I am seeing a psychologist - the worst was when i was contemplating reconstruction. Although logically i liked the idea of reconstruction, emotionally i just couldn't cope with it. I don't really know why. When the likely result (something with shape but not much feeling, no nipples etc) plus the risks (including extra operations now and later) were reeled off to me by the surgeon, I really balked. Every time i talked to the breast care nurse about it, who was really lovely and experienced and balanced, I would talk and cry through the whole conversation! She was the one who said, "I don't think you're ready to make this decision yet", and she was right, and I hadn't realised that at all. I was just trying to be brave and practical about it all. After that i cancelled all the reconstruction plans for now and i felt better.
At around the same time i went through another stressor related to my extended family which didn't seem big to them but was huge for me, in which my sister-in-law told me that i had done less parenting than my husband (might not sound big, but it was huge for me). She had no way of knowing who had done more parenting, and she was wrong. My husband ,who also said almost the same thing a day or two earlier (after they had both been talking to each other) but didn't remember, didn't think either or them had done anything wrong. I was agitated and distressed for about 6-8 weeks about it because it is really very difficult to raise challenging points with my husband. In the end i got to a place where i could raise it, she apologized (poorly, but anyway i wanted to let it go and i just accepted it); he still said there was nothing wrong but i said i needed him to apologize, retract it, and say it would never happen again! Haha. I really needed that. He agreed and we moved on. I'm still depressed i think but unless i have extra stressors like these (you know, other than cancer) I find it hard to make it to counselling!
I will try to go back to counselling and i really need to get better at regular exercise, daily would be best, because it does help me so much. I am not great at routine. Sometimes i don't know how to fit it around a small child. I do sometimes just do squats and lunges in the house. It's a 2k walk to town and i used to push him there and back in the pram and we both liked it, but he doesn't like it anymore, and he also won't walk or bike it yet either. Sometimes we put on music and dance.
Hope you're all ok today x - Hi @ Romla, just thinking, did your oncologist say what the krill oil was for? Thx
- I tried Krill Oil but it didn't make any difference to me. That was very early on though. I might circlecround and give it another go.
- @TaraV, I find if I take the Krill Oil just before I eat it has no ill effects. I also swallow a whole glass of water with it. :)
- @Zoffiel The way you describe your first year back is really how i think mine would be - it's not very tempting :( . Your courage and perseverance is inspiring x
- @TaraV maybe some low level indigestion from Krill oil not sure but basically ok.Might be wise if you can to edge back into work maybe parttime as is shock at the pace after any prolonged absence.
- I'm back at work @tarav
I can't say it's been easy but I'm steadily building my hours up. Now I know what I'm doing, it's a lot more comfortable. The first year was horrible; between fatigue and constantly making stupid mistakes I'd end most days crying on the way home. I was definitely my own worst enemy--Id been so used to operating at high speed and high levels that finding out I could barely manage a band three position was demoralising. At best.
Anyway, I just do what I can and try not to look back, there's no point. - Have people been able to work? I work in language teaching and I have not been back yet. I very much doubt I'll be able to do it - I'm so vague, forgetful, can't remember words. I don't know what I'm going to do.
- @Romla Does the krill oil make you nauseous at all? I'm so nauseous right now from nothing - just eating toast, fruit, plain salads and plain rice.
- @Sister have you considered trying Krill oil capsules ? It requires much less to get the same effect as fish oil as more concentrated form.The revitive I use daily on my feet for plantar fasciitis is helping a lot and there are “electrodes “ that can be attached to other parts of the body.My pharmacy hires them so I guess others might too if you’d like a trial.
