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
- I'm still struggling with mine. My onc has said I can take a break but he'd prefer it as a last resort (my cancer was lobular and very fast growing so that may be why). I've started seeing a rheumatologist who is great at listening. Unfortunately, it's a trial and error thing to identify just how it's screwing me up. Trialled a very low dose of Lyrica without effect and about to trial higher dosage to see if that helps. If not, then we'll be looking at other meds that work on different pain receptors. Codeine works beautifully but we know the issues with opioids. Exercise can help - if I can do it, which is not always possible if the pain is too bad. Swimming or aqua-aerobics is the best as there is so little impact while at the same time, being in water helps to stretch the tendons and ligaments. I have tried many supplements such as glucosamine and fish oil but not successful (the oil may have been but I found I couldn't tolerate the amounts).
- @Zoffiel
Sorry to hear how rough it's been. I hear you when you say you hope this has some positive end cos otherwise we could be, I don't know, just trying to be happy. Maybe we'd never get it out of our heads anyway.
X - For what it’s worth my medical oncologist suggested Krill Oil tablets which I have dutifully taken daily since I started Letrozole. Not sure if they are working but unwilling to come off them.
Letrozole is no picnic and something I was terrified of but I believe it’s the best shot for me so I persist stubbornly.I do believe from my reading on here that women who’ve had chemo find it tougher and I did not have chemo.
The original non generic version of Letrozole is Femara manufactured by Sandoz who make the generic version I use.If a change of brand doesn’t help there are other aromatase inhibitors that people on here have changed to with greater success- that may be worth a chat to your oncologist about.
PS I wouldn’t suggest my exercise has been robust just consistent -an hour daily on hilly terrain regardless of the weather with earplugs on listening to music on my phone to forget I am exercising - but it certainly helped with joint stiffness and I even think my mood - a small daily corner of MyTime. - Hi @kmakm
There's a lot there I didn't know. It's amazing the outcomes were the same with 3 months on, 3 months off.
It's so hard to tease it all apart. I agree we may just need to roll with it at times. It's interesting that you've been able to do a lot of observations and work out which things can be improved, and which so far cannot.
I'm trying different supplements, but I'm super effective at recording what works and what doesn't. I think I'll need to get more systematic. I will try magnesium again - I only did it half-heartedly.
Thanks for your other suggestions and support -I'll look it all over again. x - Thank you so much, Romla. I was exercising more a few months ago and am getting back into it a bit - its good to hear that a really robust exercise habit helps. I'm gonna really try and make a commitment to it.
I knew there were different versions of Letrozole (I've tried two), but had no idea there were so many. I'll try another one.
I'm really glad to hear that you were able to make it all more doable. Good luck. x - I'm just starting my third year of AI. I'm glad to be alive, and given my chances were slim (unlike my ever expanding arse) you've got to say that's a win.
I was on Tamoxifen for 5 years post 2006 and had zero side effects. None. I still had periods. I still had cancer, which I didn't know about.
AI has been a shitfight. But maybe, no pain, no gain.
I surely hope all this is not a waste of time that is wrecking what is left of my life.
Only one way to find out.
I'm fucking sick of wearing the big girl undies. - @TaraV I’ve been on Letrozole nearly 3 years. It was rough to start with for 3 or so months but I found walking an hour daily helped a lot with aches and pains - I could walk thru it I guess.There are about 8 different manufacturers of Letrozole in Australia who use different fillings and coatings.There has been a bit of talk online about sensitivity to different fillers and coatings. I didn’t pay much heed initially but last year found I had a reaction to the brand supplied here by Chemist King causing me spiralling down into depression after 3 months. I now take Sandoz brand from Chemist Warehouse and much better - been on it 12 months.I’m not advocating any particular brand but am suggesting maybe a change of brand and see if it makes a difference like it did for me. I now believe not all Letrozole tablets are the same even though the active ingredient is.
- Hi @TaraV. It is scary but my oncologist (who's often invited to give speeches & presentations at conferences) assures me it's fine. She said they've even studied three months on/three months off and found it makes no difference to outcomes. They just don't recommend it as it's too difficult to keep track. I have a genetic issue as well. It's an extra layer of tough.
I found some of the side effects have improved as time has gone by, but as you say, maybe they were the chemo side effects finally wearing off. However other side effects have got worse. But what's the cancer diagnosis, the treatment, the menopause and other life shit, who can tell? What I have found interesting is the soft tissue pain in my arms has just about gone in the six weeks since I last took Letrozole. The ankle and hand bone pain has not gone completely this time, but enough to provide me significant relief.
The hot flushes have not abated. Nor has the depression. So I'm concluding that I am particularly estrogen sensitive (which my oncologist had conjectured) and the my menopause would have been challenging, even if I hadn't been shoved over the estrogen cliff by BC. Then again, maybe my body would have coped with a steady decline. We'll never know.
I get more headaches, have waves of nausea preceding many of the hor flushes. What to do? Have you tried working through the supplements that many find helpful, like magnesium? Are you in counselling? The symptoms you describe are sometimes signs of depression, which is a listed side effect of Letrozole. Perhaps discuss it with your GP. With such a young child I quite agree, you'd definitely want to be present in an emotional way.
To my immense frustration I've discovered there are no shorts cuts. Post active treatment is for many, deeply difficult. It's trial and error and boring sensible things like healthy eating, regular exercise, no smoking, minimal to no drinking!
Hang in there and work through the process of finding out what works for you. And keep sharing here. We're all looking for the magic bullet so if you have some success we want to know! Big hug lovely, K xox - Hello all,
Thank you for your stories - sorry for your hardships :(
I'm 47 - BC put me through menopause via chemo and then and I took Tamoxifen for 6 months and now 6 months on Letrozole. I cannot imagine taking it for 10 years right now. My situation is not as bad as yours - I do not have strong pain, but i'm really starting to struggle on Letrozole. I have a 5 year-old and want to be available to him in some sort of positive way. However, I am very flat, negative, very vague, tired, forgetful and for the last 2 or 3 months have had headaches and now nausea and indigestion daily. I don't know which parts are Letrozole and which parts may be still from chemo etc. I had started of thinking of taking a break from Letrozole too - so I'm quite glad to see some people have been told by their onc's they can do this. It's scary to do this though, isn't it? In case it comes back. I still have 2 prophylactic operations to have in the next few months as a I have BRCA too.
XX TaraV
