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Letrozole anyone?
Hello, 

I have been taking Letrozole 2.5 mg daily. I started last August 2016. I will have to take it for the next five years . 
The initial side effects are gone for the most part, hot flashes, sleeping troubles ( still not sleeping well but I don't think is due to the use of Letrozole) . Nausea is also gone. 
However, while these symptoms or effects are gone , I notice some different ones. I am having constipation troubles and severe body pains. Mostly or particularly my arms and shoulders  hurt badly and constantly, it is not just joint pain, which I was advised might happen when taking Letrozole, thing is, it is not joint pain only, my whole arms hurt, so do both of my shoulders and my neck started to hurt also. 
I saw my oncologist recently. He seems to think both things , constipation and body aches are related or due to Letrozole.  Even though he has not heard about constipation issues with it, nor the body pains, since it is essentially the only " new or different " thingh I am doing /taking these days, it must be all caused by Letrozole . 
My hair is also thinning... 
Anyone out there that uses Letrozole and is or has experienced any of the same side effects? 
If any, how do you cope  with that?
My oncologist suggested me to take laxatives and stool softeners on al regular or even daily basis. This is worrisome to me. Using laxatives daily can' t be good for anyone . Needless to say they are habit forming and eventually stop working . 
I am trying other methods like, more fibre in my diet, liquids, exercising regularly, fruit, etc. 
As per body aches, I have to wait as well. My oncologist said that since I will have to stop it for several weeks in the near future due to the fact that I will have to go for surgery in a couple of months from now, then it will be a good time for me to know if the symptoms go away while I am off Letrozole . If that is the case, it will be obvious all are side effects and he will discuss with me wether to switch or not to something else. 
One of the things I have found most annoying about this whole nasty ordeal of having cancer is the uncertainty of everything! All boils down to " it can be this or that, or we don't know for sure"  maybe " ... Arrrrrgggghhhh! So annoying and frustrating!
Any input will be truly appreciated. 
Thanks everyone.
A frustrated and lonely and no so pink butterfly.
47 Replies
Flower lady
21 Posts
Hi I am also on Letrozole , and feel like a 90 year old ( I am 53) . My joints ache whenever I move ,especially after sitting / laying down  for a few minutes . I find Aleve helps but I don't think taking it 2 x s a day is very good for the stomach so I only take it when I am really hurting  .This side effect has progressively gotten worse for me ( I have been on it for approx 4 -5 months ) . I have also noticed that sometimes when I sit down at work ( I am usually on my feet ) I get a horrible nauseous & exhausted feeling &  kind of dizzy . It passes fairly quickly thank goodness as I am usually meeting with someone when this happens .i have not had any constipation side effects . At first I noticed my hair thinning but it seems to have slowed down a bit now ( thank goodness I already have thin hair ) 
i have an oncologist appointment this week and I am hoping there is another medication I can try other than Letrozole but if it is working ???? I might opt to stay on it .I have metastatic breast cancer and understand that there are other treatment options to keep me going as long as possible .i don't really want to eliminate an option so soon into this journey . 
Thank you for sharing your experiences it helps to know that it is likely the Letrozole side effects and not OTHER things going on in my body / mind . 
Hi Flower lady, 

Thanks so much for sharing your experience with Letrozole. As you said, it definitely helps to know all this pains ,aches, discomfort, etc, are most likely from Letrozole. It gives us sort of peace of mind. One of the things I find the most difficult about cancer is the anxiety we feel at every pain , change or discomfort we may have. Everything becomes a source of concern and worry, even a sudden ear ache!
Although I have some joint pains, the pain is more like a muscle pain. Like when you lift something really heavy, or when you exercise or do weight lifting. It is very annoying! 
My hands get cold and my finger numb. Sometimes I wonder if could be the results of the mastectomy ?  
I saw my oncologist a few days ago. He seemed to think it is the letrozole causing all the symptoms . We talked about switching to another medication. But just like you said, changing medication early in the game?  Not only that, all things considered, we are not doing too too bad with it in comparison to what I have heard about side effects from other medications . 
When i first started taking it , I did have some nausea. Not always and not to bad. Luckily that is gone. 
I do get tired more easily nowadays.  And yes, sometimes I feel a lot older than I am , 52. 
I do notice that exercise helps me . I try to exercise at least 3 times a week . Sometimes more . It takes my mind away also.
Are you taking calcium ? I am. I started getting the calcium injection every 6 months. On top of taking a daily calcium supplement. Letrozole causes osteoporosis so my oncologist told me to do all this as well as weight bearing exercises. 
I am supposed to go for the second phase of reconstruction surgery in two months or so. I will have to stop taking Letrozole two weeks prior to the surgery and two weeks after . My oncologist said that stoping the medication due to surgery, will be a good opportunity for me to see if the symptoms disappear for that time or get less intense. If that is the case, there will be no doubt they are the side effects from Letrozole . Then we can decide if should I switch or not to another medication. 
I will keep you posted. Perhaps you can do the same ?
We can do this! Let's be positive and strong . We have no choice. 
Thanks agaig Flower lady for sharing this information. 
I wish you good luck on your next appointment and all along this journey. Hopefully we can keep in touch. 
Warm regards ,
Pink butterfly 
 
Orchid1
21 Posts
Hi, sorry you are having difficult side affects. I was on Letrozole for a year. I had stiff joints when getting out of bed or after sitting. It never lasted long once I got moving. Whenever I squatted it would hurt my knees. Like you, I had significant hair loss. On my annual apt with my oncologist I mentioned it so he switched me to Arimidex. I have less hot flashes and the stiffness and the and sore knees have gone away. My hair doesn't seem to fall out as much but I haven't noticed my hair getting thicker. I switched Nov/2016 so hoping it is too soon to notice any significant regrowth. 
I wish you luck with your journey. 
Hi Orchid1:

Thank you very much for your replay.  I have been taking letrozole less than a year. I mentioned to my oncologist last month when I went for my follow up check.. I asked about taking a hair supplement , asked him if that will be possible, if doing so wouldn't interfere with the medication. As always, he couldn't give me a straight answer. He admitted not knowing much on the subject . I also asked about using a shampoo . He said that would probably be ok. He finally mentioned the possibility of switching medication . He said that because I am supposed to be going for surgery in two months. For that I will have to stop taking letrozole for two weeks prior to surgery and two weeks after surgery. He said this will be a good opportunity for me to notice a difference, to notice if my aches go away as well as my constipation issue.  Although 4 weeks might be enough time to notice a difference for aches,pains and other issues, I doubt. I will see a significant change with the thinning of my hair. 
He said we can always discuss switching medication on our next appointment which will be next May. I really don't know what to do. 
I am glad to hear you are tolerating the new med well, better anyways. Have you noticed a change in your weight? I have heard about other medications causing weight gain. I have lost weight and frankly I don't mind it. Would not like to gain weight due to a medicine instead of food!
May I also ask you, what kind of annual check up did you get? What tests did they run for you ,mot check everything is well, under control?  
Next April will be a year after my diagnosis . So far they only do pretty basis check ups for lumps. 
Thanks Orchid1!
Take care and all the best to you !
Pink butterfly
Flower lady
21 Posts
Update , my oncologist switched me to Anastrozole and after 2 months I have the stiff joints & muscles again but not as severe as with letrozole . Still never sure if the is side effects or other issues ? Last scan showed no new bone lesions & a shrinking of the lung node so I guess it is working . 
How are you doing pink butterfly ? 
Hello ladies,
I have been taking Letrozole for only 2 months, and am not liking the aching joints. I also seem to be getting tired easily too.  I don't want to feel so old for another 5 years!  I have been staying active.  A little bit of activity makes me feel better, but when I have a couple days of more activity (what used to be normal!), I am Very sore. It seems from your posts that the achy joints don't get any better - is that right? 
Orchid 1 - how has the Ameridex been?
And Flower lady - how has the Anastrozole been?
Any changes for you, Pink butterfly?
All your posts have been very helpful:-)
Thanks,
Garden dreams
 
I started taking letrazole a week ago. How quickly do side effects appear? I have been very tired but that could just be from the stress of my recent diagnosis.
Kitch
8 Posts
My advice (having completed 5 years of Letrozole last week) is don't think about taking it for 5 years think about taking it for a month or 6 months at a time.  Anything can be overwhelming if you look too far in advance.  The side effects either lessened or I adapted to a new normal so I did get through the 5 years and reached the other side.  In the early stages I reminded myself that the surgery, the chemo and the radiation had more intense side effects but it was worth fighting through them and why would I quit something that is designed to keep me from repeating those experiences.  Keep your focus on short term!  I guarantee that if a wimp like me can do this it can be done!
Kismet
107 Posts
I finished radiation 2 weeks ago & I am supposed to start a 5 year or perhaps 10 year treatment of letrozole but it's really making me nervous & apprehensive when I read up on all the possible side effects......my question is - did anyone get blood work to measure cholesterol levels or a bone density scan done prior to starting this treatment??
I have had a bone scan and have blood tests every week. Not sure if cholesterol is one of them though.
Kismet
107 Posts
I am not scheduled for blood work or a bone scan & when I asked my radiation oncologist & my medical oncologist they both said it "wasn't necessary"!! I'm 58 years old so this is a real concern for me - how will they know if the letrozole has caused osteoporosis if they don't do a bone density test first??
My achy joints started about 2 weeks after starting letrozole.  At first, i just had to flex my hands a couple times, walk for about 30 seconds, and i was fine.  Now, a little activity is good, but i need to take more breaks so my aches stay mild.
I had a bone density scan after all my treatments ( 3 of FEC and 3 docetaxal, then radiation) because the docetaxal (i think) causes bone loss. I have some bone thinning in my thigh bones, but not at osteoporosis levels.  I will get a bone scan about every 6 months while I'm on letrozole.
Thanks for the tip on short term goals!
My nurse suggested I drink Tonic Water to see if it helps with achy joints - tonic water has quinine in it.  So I'm trying it, and the nurse will check in with me in a week.
I have been on letrozole for 4.5 months and I am starting to get very bad joint and muscle (?) pain. It started in my knees, hips and shoulders and now seems to be affecting my entire spine. Maybe I am mistaking the natural pains of aging for letrozole side effects. Anyone else experiencing severe spinal pain? 

Also, what pain medication is recommended for these symptoms? Acetominophen, ibuprofen, naproxen, codeine? I'm not taking anything so far, but if it gets much worse, I will have to consider it.
Elsie13
1535 Posts
maplepower‍ Sorry to hear about the worsening pain. I'm not on Letrozole, but I just wanted to say you really should ask your doctor about which painkiller to use. Your situation may be unique.  You may have a pre-existing condition that others don't have, so it's probably best to get in touch with your doctor or nurse about this. Hope you get your answer soon.  Keep in touch!
Hi maplepower, I stopped taking letrozole after 3 months because the aches were getting pretty bad.  (I didn't find that tonic water helped at all.)  It sounds like your aches are worse than mine were!  I saw my doctor 3 months after I stopped; the achiness had gradually lessened, but was still there.  He asked me to try a related medication - anastrozole.  I have been taking that for 3 months now.  It is not quite as bad as letrozole, but getting close.  I was given naproxen for the pain, but then told not to use it much because it can damage your liver and kidneys.  I have tried taking Tylenol on days that I know I am going to be busy.  I get a bit of tempoary relief.  I haven't tried it much - my pain is mostly manageable - and I also don't like the idea of taking a lot of Tylenol.  If I take 2 extra strength Tylenol, it helps a bit.  I am also a yoga fan!  Exercise can give short-term relief, and meditation might help too.  Hope you find some relief, or at least a way to manage the aches!
Hi garden dreams‍ and Elsie13‍ ,

Thank you both for your replies. I will take your advise and discuss this with my doctor. I do not like taking medication at all - post cancer body awareness and all - so I'll find out what will do the least amount of potential damage to my body's organs. Perhaps, if this gets any worse, I will ask about other AIs as well. 

It is -35 in Winnipeg with the windchill right now! Maybe a warmer climate would be medically recommended! ;)

Have a great holiday season!
I just started on Letrozole about on Dec 14th a couple of weeks after my last radiation.  At first I thought I was going to have constipation problems but seems to be okay now.  I haven't had the aches or pains mentioned here, does that happen the longer you take it?  I've noticed being a little chilly at times, but just put on a sweater and the hot flashes have not really happened, haven't noticed.  It's nothing like what I went through during menopause.  I have to take it for 5 years.  I do have to go for an infusion twice a year to prevent osteoporosis, I hope that doesn't cause me problems as described here.   I think it's going to be okay!
Hi Scardysquirrel.
My aches didn't start for at least 2 weeks after I started letrozole.  Maybe you'll be one of the lucky ones without this side effect!  Or at least they should be milder aches, especially if they haven't started yet
Elf
1 Posts
Hello, after chemo, mastectomy and limph nodes removal, radiation now is already 3 months after and  with 2 months on letrozole. The pain in my left side and arm continues. My radiologist adviced on massage, Tylenol and Voltaren ... Can not afford massages, Tylenol more chemicals!.? !? for my tired body and Voltaren I might try. ANY ADVICES FOR THE PAIN and what is the reason for it THANKS 
Drscrs
119 Posts
I have been on Capecitabine for about 5 months,  I am having a lot of pain in my left leg inthe calf area.  Does Capecitabine cause such pain?  This is my second bout of cancer.  In 2015, I had colon cancer, surgery,chemo and radiation followed.  The cancer spread to my lungs, and in 2017 had surgery on my lungs.  I had no side effects during the first bout of cancer, but am paying up for it with the second bout.

I haven't been here very often, just too sick.  I finish my treatments this month of April.  I am hoping that after treatment, the side effects will go away.
 
I found the Anastrozole much easier to tolerate than Letrozole.  Even on Anastrozole, I found that alcohol and grapefruit made the aches worse, and also made me much more tired.  I think that blueberries might do it too.  It seems to be like allergies - when my aches are worse, I try to think what has been different.  So I stopped with blueberries for a while, stuck to a basic diet, then tried blueberries again, and again I seemed to be achier.  I don't know if the blueberries affect the anastrozole, or if there's an allergy reaction that affects the anastrozole. (My allergies will flare up and calm down depending on other stuff that's going on)

As for why these drugs cause aches at all, my doc would only say that it's complicated.  The closest I got to an explanation was from a nurse who said that estogen is used by the body for a lot of things, not just reproductive stuff.  So muscles, tendons, bones, etc may be used to using estogen and are complaining about its lack.
Elsie13
1535 Posts
Drscrs‍ , I'm afraid I don't know anything about capecitabine. It might be a drug side-effect you're having, or something else completely different. You should probably contact your doctor or nurse. Let us know how you get on. 
Drscrs
119 Posts
Hi Elsie13
I am hoping that this pain that I am having is from the medication.  I will see my onco on Monday - can't wait.  I am one big pain.  There isn't a part on my body tthat is not is some sort of pain.  I struggle to come to some understanding with myself on what is the point in continuing on.  Life is not worth this pain.  Don't worry, I not going to do anything stupid, I just wish this constant pain would go away.

I am almost finished my treatments.  I have one cycle of three weeks left, hopefully I can get through everything.  I will be speaking to my doctor on Monday to see if he can give me something so that I can tolerate the pain. 

Take care and thanks for replying.
Wayne
 
Rene
65 Posts
Hello Everyone,

​I am a newbie since March 2018, diagnosed with IDC in Oct 2017, went for my 1st Chemo and I learned things the hard way, was going to go for 2nd round of Chemo, but Oncologist decided to tweak my medications to Letrozole in Jan 2018, I was strugging for 2 months and finally I was stable and continue to take the Letrozole, however the sign effects were annoying like the hot flashes during my sleeping time, Sigh! 

​Having read a lot of people who have experienced taking Letrozole, sign effects, and bone scan/ Bone density to ensure bones are not effected, I just learned something from each person on here, and now have a better understanding of what Letrozole can cause and effect.

​I continue to read, learn from people living with cancer, and their stories/ experiences. I am grateful for Cancer Connection that I can keep myself balanced and educated with source of information given on here.

​Have a great day E1 (Everyone)
Quinn
Elsie13
1535 Posts
Hi Quinn‍ . I'm also very glad that I'm part of cancerconnection. There's a lot to be learned from other people's stories, and not just physical things, also how we deal with emotions, what it's like to be a caregiver, and so on. 
Renu
117 Posts
Yea I'm on letrozole. The hot flushes definitely there during night time, but not as bad as when I went through menopause.  I've put on weight too despite yoga and walks daily.  Getting headaches too but that is also due to the Mumbai heat.  
I've  also started Pregabalin 150mg for the nerves.   One capsule morning and two at night time. Pain getting less for sure.  I also take Tylenol extra . 
This site is great and helpful for sure.  Lots of information, and everyone is so kind and wonderful.  
I was just going to start my own topic on Letrozole, but saw this post so started reading.  I've been on Letrozole since about January, started shortly after my radiation treatments ended.  I also go for a treatment at the hospital called a zoledronic acid infusion, it's supposed to prevent osteoporosis from the Letrozole.  It's kind of like a chemo treatment only shorter and not nearly so bad.  I've only had one so far, it's every six months.  I have one coming up in July.  I too am going for a breast reduction in June.  Anyway, as far as the Letrozole goes, I thought I was tolerating it pretty good.  However, last night I woke up with the most horrible pain in my right foot - toes were just just burning.  I had to jump out of bed about 4 or 5 times.  Every time I lay down it got worse.  Up until now my side effects haven't been too bad.  I had a bit of constipation on and off but nothing like when I did chemo.  I eat a really healthy diet and go for walks and drink lots of water.  I've had the hot flashes, but they're not bad.  It's over pretty fast.  My main side effect is fatigue. I feel like I did during chemo.  I just have no energy and I'm somewhat depressed.  My memory is somewhat effected too.  I can't think of words and have to really concentrate.  I've not really mentioned much of this to my chemo onc, because I don't think she would blame the Letrozole.  Oh and I've still got some leftover chemo foot neuropathy in my toes as well.  I haven't lost any hair, thank goodness - it was bad enough with the chemo!  I will keep my eye on this though.  I'm glad I still have my wigs should this happen.  Has anyone else had the foot pain from Letrozole?  I'm assuming this is the cause.  Last night was the worst pain so far.  Sounds like everyone experiences different side effects from taking Letrozole.
Kims1961
2097 Posts
scaredysquirrel‍ Just saw your post and am very interested in this topic as well!

Hello All!  I have just been prescribed Letrozole as well but haven't started it.  I meet with the radiation oncologist today to discuss radiation.  My worry was starting this med - with all of the side effects and radiation at the same time.  

Did anyone do both at the same time?

I am going to follow this thread  - great discusssions!  Thank you  Kim
Great topic scaredysquirrel‍ and Kims1961‍ 

I'm wondering if maplepower‍, Caroline‍, Pink Butterfly‍, Flower lady‍, Orchid1‍, garden dreams‍, Kitch‍, Kismet‍ could provide an update on how they are doing? Any side effects?

Would be great to get your feedback and hear from you Ladies! :)
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