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Letrozole anyone?

Re: Letrozole anyone?

Posted by Quinn on Apr 12, 2018 12:48 pm

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)

Re: Letrozole anyone?

Posted by Elsie13 on Apr 14, 2018 5:18 pm

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. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Letrozole anyone?

Posted by Renu on Apr 26, 2018 3:06 am

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.  

Re: Letrozole anyone?

Posted by scaredysquirrel on May 1, 2018 8:43 pm

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.

Re: Letrozole anyone?

Posted by Kims1961 on May 2, 2018 7:10 am

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
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Letrozole Update

Posted by Lacey_adminCCS on May 2, 2018 10:20 am

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! :)

Re: Letrozole anyone?

Posted by CarolineH2018 on May 2, 2018 7:19 pm

I have been on letrozole since July and I am tolerating it well. Fatigue is the main issue along with periodic constipation. No joint pain fortunately.

Re: Letrozole anyone?

Posted by garden dreams on May 3, 2018 10:59 am

I started letrozole about the middle of May 2017.  I was fine for the first two weeks, then started to get achy joints.  I looked up info, talked to a couple of people, then stopped the letrozole after about 3 months because of the aches.  Nothing I tried reduced the aches.  I could function fine, but I felt like I was eighty years old.  The doctor switched me to Anastrozole, which I started in Oct 2017.  I still got joint aches, but not near so bad.  Around Xmas, there were a couple of days that were worse, and I thought the anastrozole side effects were still increasing, but I think it was the one alcoholic drink I had.  Later, I tried again, and yes, alcohol makes the aches worse and makes me very very tired.  Grapefruit will also make aches worse.  Then I found that blueberries and maybe blackberries do it too!  I took Anastrozole for about 6 months, then decided to stop so I could enjoy my summer without aches and without worrying about what I eat.  I've been off it for about a month, and the aches are almost gone.  I see the doc in August, and we will talk about anastrozole again.

Re: Letrozole anyone?

Posted by Lacey_adminCCS on May 3, 2018 2:36 pm

Thanks for sharing garden dreams‍ - good to hear from you. Let us know how it goes.

Glad you're tolerating it well Caroline‍ 

Re: Letrozole anyone?

Posted by scaredysquirrel on May 3, 2018 4:27 pm

Wow, after reading all the side effects here that everyone is suffering, I guess I'm lucky so far.  I'm extremely tired all the time, worse in the afternoons, I nod off about 3 pm everyday.  I don't have any energy and mornings are tough to get up and go.  I can't even imagine myself back at my job under pressure.  I've had the odd ache and pain, but it does not last long.  I still have the foot neuropathy from my chemo, so I can't really tell if it's that or the Letrozole.  I did have a horrible pain in my right foot the other night, but it id go away.  I guess I'm so used to aches and pains from sciatica and old age, I can't tell if it's the Letrozole or not.  Anyway, interesting how it affects everyone differently.  Thanks for the input.


Re: Letrozole anyone?

Posted by Kismet on May 3, 2018 9:33 pm

I have been on letrozole since January & tolerated it very well for about a month then the fatigue set in - felt like I was going through radiation treatments again but it was the body aches & pains that got increasingly worse that made it so intolerable that I had to quit taking it - I literally could not get out of bed & working was virtually impossible considering my job is so physical.....I am slowly beginning to feel better but still have not regained my energy levels - hope it returns eventually!! I have not discussed this with my oncologist yet.....I don't have an appointment til June.....

Re: Letrozole anyone?

Posted by scaredysquirrel on May 7, 2018 1:40 am

Hey Kismet‍ I hear you about the fatigue!  I'm always feeling like a ninety year old.  My energy is always low and I move at a slow pace.  I certainly couldn't keep up at work right now.  My job is very physical.  I don't feel quite as tired as I did from chemo or radiation, but I definitely lack energy.  I'm finding if I get out and walk or do exercises at home, it does help.  My husband and I went to a movie this afternoon and then for a nice drive.  I've heard some experience hair loss with Letrozole and I surely hope that does not happen!  It was horrible through the chemo to lose all my hair.  My hair has come back with an abundance it would sure be a shame to go through that again.  Good thing I kepi my wigs!  Anyway, so far it's okay.  I'm not experiencing much pain, although sometimes I have aches and pains.  My feet and toes still bother me from the chemo neuropathy.  I wish you luck in finding something more tolerable than Letrozole.

Re: Letrozole anyone?

Posted by Kismet on May 8, 2018 9:48 pm

Thank you scaredysquirrel‍ ......I am happy you seem to be tolerating the letrozole so far.....hope you continue to do well on it.....take care

Re: Letrozole anyone?

Posted by scaredysquirrel on May 17, 2018 7:00 pm

Anyone notice any hair loss while on Letrozole?  I just noticed a few hairs today falling out.  My scalp felt quite itchy as well, I know there can be some hair thinning with this drug.  I don't know if it will be as bad as chemo, but I've noticed the odd hair falling out.  

Re: Letrozole anyone?

Posted by Tutti on Jun 26, 2018 9:54 am

Hi Kismet,
Could you let us know what happened at Dr’s appt?  Are you going to start a different med? Did your symptoms abate after awhile?
Thank you! :)


Re: Letrozole anyone?

Posted by scaredysquirrel on Jun 30, 2018 9:11 pm

I woke up at about 3 am this morning with a horrible throbbing pain in my left ankle and lower leg.  I had to jump out of bed and walk around for awhile until it subsided, I actually to two Advil.  I'm not sure if this is from Letrozole, I've had the pain before in the right foot/ankle.  I've read some experience joint pain from Letrozole.  It's a horrible jabbing pain that goes away gradually.  Anyone else have this?  Other than fatigue and some left over chemo foot neuropathy, my adjustment to Letrozole has not been that terrible, until now.  

Re: Letrozole anyone?

Posted by Cinderella59 on Jul 1, 2018 12:36 am

scaredysquirrel‍ Hi yes I get pain also. It’s from the Letrozole unfortunately. Plus I have chronic pain and arthritis and fibromyalgia. 
I stopped taking it for abt 6-8 wks to see how bad it was. It only went down to abt 10-20% the dr was going to change the pill to Tamoxifen but we decided not too. Bc she thought it might be better but it could make my pain even worse. 
Everyones different. 

Oh oh well the joys we have to endure during this crazy ride that we’re on. 

Take care. 

Oh and I found this at McDonald’s I keep on forgetting to send you a picture of it. Lol 

Re: Letrozole anyone?

Posted by scaredysquirrel on Jul 1, 2018 1:42 am

That's interesting Cinderella59‍ .  I only get the pain at night and not very often.  I'm not sure if I should mention it to my chemo onc at the end of this month or not.  Sometimes I'm not sure she connects things to the cancer meds. I don't really want to switch to something different, because it could be worse side effects.  I'll have to think about it.  Hey, I love the picture! Thanks.

Re: Letrozole anyone?

Posted by Azlynn on Jul 15, 2018 12:04 am

I would like to share that I was given the opportunity to take letrozole I had decided I would until I saw an oncologist at the Cross Cancer that put all revelant information into a program on his phone and told me taking the letrozole would only make .6 difference whether I got cancer again. Totally not worth it in my opinion. I hope you other ladies had an oncologist that did the same. And if you aren’t sure whether you want to take this medication maybe check into how much of a difference it really makes. Originally I was told 5%.

Re: Letrozole anyone?

Posted by sunny day on Jun 30, 2020 11:58 am

I started Teva-Letrozole in January 2020 (after chemo and radiation). I was fatigued, dizzy and could only walk at a very slow pace, no matter how hard I tried. I also had joint 4/10 pain after trying to stand after I sat for a bit. I thought I would rather have this then get cancer again!  THEN because of distribution problems due to Covid, in April 2020 my pharmacist switched me to Nat-Letrozole, another generic. Within 3-4 days, the joint pain was excruciating 9-10/10. I barely could make it down the stairs, stand up from a seated position and forget getting up off the floor or from the tub! I felt like I was 90 years old and I am a fit 59-year-old! Interestingly, once moving, the pain subsided and I was able to do brisk 2-hour walks and 45-minute light jogs. I was so happy for this but the pain outside of this was way too much to cope. My pharmacist miraculously found “the last box in the city” of the original Teva-Letrozole. I temporarily switched back until we found another solution.  The pain to stand up was again a tolerable 4-5/10. But surprisingly I could no longer do my light jog, nor brisk walk. It was like my hips were tied together with a rubber band and the fatigue too deep. I then researched the additives for both generics and all were completely different between both generics. No studies in my extensive research on the additives explained these side effect differences. THEN I found a blog where a nurse of 40 years confirmed that different generics have different side effects and there are many!  She recommended Femara the non-generic version of Letrozole. She said it was cleaner and had way fewer side effects (and more expensive). I insisted my pharmacist get my oncologist to prescribe it.  OMG what a difference! The joint pain is about 1-2/10, I am not dizzy and I am jogging again! The fatigue is there but it is tolerable. I have been on it for 2 weeks.  One new side effect is the hair on legs has not grown since I started Femara. I fear I may lose some hair. Another side effect is I get significant bad back aches 8/10 on Femara after long jogs and too much activity.  They subside if I lay on the floor for about ½ hour after they start. Three days ago, I switched to taking Femara at night and have not had a back pain since, perhaps I am hopeful but I think it has made a difference!

Re: Letrozole anyone?

Posted by Wendy Tea on Jun 30, 2020 12:11 pm

sunny day‍  Everyone experiences different side effects.  I am on tamoxifen now but Letrozole sank me into a deep dark depression.  Keep track of your side effects and know thyself! I always tell my medical team every thing and let them decide what is important. 
Healing takes time and opportunity. Wendy Tea

Re: Letrozole anyone?

Posted by Lianne_adminCCS on Jun 30, 2020 5:12 pm

Welcome sunny day‍ and kudos on your first post. I am so happy to hear that  you have found a med that is more manageable for you as far as side effects go.
As Wendy Tea‍ alluded to , may of us respond differently to the different drugs. I have heard others say they found a difference in different manufacturers or generic vs  name drug..
I always suggest people work with their oncologist to track the side effects,  and anything you may have eaten or done that could be a trigger.
It is often trial and error. I went through all of the options before landing on one that worked for me.

Thanks for posting.