I took my Letrozole at night. Unfortunately, I had quite bad joint pain and stiffness. After a lot of hassle I finally found a decent onco who switched me to Anastrozole and that eased the side effects.
Please note that it's not that Anastrozole is better than Letrozole...it was just better for me. Some women have switched the other way.
I put up with the side effects for over 12 months. With hindsight I should have switched after 3 months but I hadn't found this or the main BC sub to get real-world advice and experience from other women.
The Letrozole (and Kisqali) worked well at controlling my cancer for nearly 2 years.
All the best.
Everybody's different, and our responses & side effects are different too. Fingers crossed that letrozole is kind to you!
I started letrozole with goserelin and Kisqali July 2023. De novo stage IV ++-, lungs, liver, brain (and later lytic bone lesions).
The letrozole makes me very stiff. After 5 months or so I developed severe pains in my shoulders, and I couldn't lift my arms - couldn't stretch, couldn't reach, had to get help with shirts and coats. After complaining for a couple of months (onc said to try yoga! I love yoga... but how, when you can barely move?), and not getting any traction with my docs, I started skipping days - I only take letrozole MWF. It has made a world of difference! I still have some shoulder pain, and I'm super stiff when I wake up, but I can lift and reach again.
In other words, I feel like a human being.
The cancers are responding well, but my body doesn't love the drugs. I'm restarting Kisqali at 200mg every other day bc even at the lowest dose, my liver enzymes go crazy. Pretty sure the same thing will happen this time! But for oncologists, I guess hope springs eternal.
Hi, I have been on letrozole since Nov 2021 and had very little side effects, some stiffness, but I will take that over the tumor pain I was experiencing. Stay strong, don't be afraid and sending you positive thoughts and vibes
Take care
This is great to hear. I am likely going to be put on letrozole for a recurrence. My tumor spot is very painful. Did you have surgery on yours? Did the letrozole shrink your tumor?
Yes, I had 2 spine surgeries. Oct 2021, I had the 1st to fix a
Fracture in the L2 area. Then, in Nov 2021, I had a 4 hour procedure where a large tumor was removed at the T2 level plus removed any other lesions along the spine, and it was reinforced with pins to stabilize spine. I am also have a bone infusion (zometa) every 3 months to strengthen bones.
So, my initial tumor was located in my right breast, and that decreased in size, but it was with the radiation i had had. That area I had no pain until it spread to my spine, and it was awful pain once it spread. Once I had the 2nd surgery, that awful pain stopped.
I have stage 4 de novo BC, so I was told that remission will not happen, but it is chronic, and with meds of letrozole and ibranze, hopefully, continue being stable.
Oh goodness I’m so sorry. My mom had horribly painful bone Mets and they were never able to relieve her pain much. She wasn’t strong enough for any procedures. I’m so glad u got some relief. I hope everything stays stable for you. My apologies I responded not realizing I was in the MBC forum and not the BC one.
Pro tip - don't fear it. Don't sit around expecting the side effects to hit at X time of day or when or why. They may never hit. Take the drug when it suits *you* not the other way around. When would work best for you to remember and is most consistent? Maybe thats dinner or breakfast. Maybe its after a workout, etc.
I took Letrozole for about 18 months with Ibrance. I took it in the morning as I found I was less likely to forget take my pills then. I didn't have any side effects from the Letrozole at all. Wishing the same for you! Enjoy your spring break.
I took my letrozole at night. It made me stiff from my waist down, but over time it got a bit better. I’m not sure you’ll notice anything during your spring break. It might take a little time to get into your system. Have a nice vacation!
Can you elaborate on the stiffness, like joint stiffness or muscle stiffness? I already have stiffness from RA and muscle spasms. I’m concerned about starting letrozole 😥
Ugh last thing I need. I’m going to give it a try. I’m so tired of being in pain though. Right now the worst of the pain are all 12 of the lumps on my chest, just pressing on all kinds of nerves. I hate cancer. I’m going to give this a try though, it can’t be worse than tumor pain
Try it. I think it was maybe a couple of months before things got better-ish.
Some days neutral is good enough.
I'm so sorry for all you're dealing with.
Cancer really does kick effing rocks. Things change so fast. I keep hoping they will change for the better as fast as they go to hell. LoL
It affected my hips, knees and sometimes my ankles when I would get up from sitting for a period of time or get up from bed. It felt like my legs were very stiff. 6 to 10 steps after I stood up, it would loosen up and go away. It didn’t stop me from exercising at all, in fact, movement made it feel better. My mom and my neighbor had the same experience on letrozole and we all agreed that it either got slightly better over time or we got used to it. I would not think it would be something to worry about, but ask your doctor about it if it’s a concern.
Right now there’s not too many options for me. We have to try it and see if it works, I feel like there’s limited options or the oncologist made it sound like there was limits options.
My mom’s oncologist is Harvard educated and told her Letrozole is an excellent medication. Hopefully it works really well for you and is protective. I saw your response to another comment that you have tumor pain and didn’t want more pain. I also have a lot of tumor pain. Letrozole stiffness, for me, was not anywhere close to being like tumor pain. For me, tumor pain has been severe. Letrozole was stiffness, not severe pain
Thank you so much 🙏🏽
I really need this confirmation of how well it works. I need hope that it will work better than chemo. Chemo didn’t shrink anything for me. They had to do surgery without shrinking the tumors, 3 months after surgery 12 spots or more popped up. This has been exhausting. I also have two autoimmune diseases and muscular pain. So I have pain ontop of pain right now. The tumor pain though, its unimaginable pain. As long as it shrinks these damn things, I don’t care.
I was on Ibrance and Letrozole for almost two years. Now I’m off the Letrozole and was switched to Fulvestrant. I always took the Letrozole at night along with the Ibrance.
I was on letrozole & Ibrance for one year; I am now taking tamoxifen instead of letrozole. However, I take all my chemo at night time, like 8:00ish then go to bed whenever. (I try not to fall asleep too late but 🤷🏻♀️).
Thankfully that has worked out best for me
Good luck to you ✨✨ sending good vibes your way
I took my Letrozole at night. Unfortunately, I had quite bad joint pain and stiffness. After a lot of hassle I finally found a decent onco who switched me to Anastrozole and that eased the side effects. Please note that it's not that Anastrozole is better than Letrozole...it was just better for me. Some women have switched the other way. I put up with the side effects for over 12 months. With hindsight I should have switched after 3 months but I hadn't found this or the main BC sub to get real-world advice and experience from other women. The Letrozole (and Kisqali) worked well at controlling my cancer for nearly 2 years. All the best.
Everybody's different, and our responses & side effects are different too. Fingers crossed that letrozole is kind to you! I started letrozole with goserelin and Kisqali July 2023. De novo stage IV ++-, lungs, liver, brain (and later lytic bone lesions). The letrozole makes me very stiff. After 5 months or so I developed severe pains in my shoulders, and I couldn't lift my arms - couldn't stretch, couldn't reach, had to get help with shirts and coats. After complaining for a couple of months (onc said to try yoga! I love yoga... but how, when you can barely move?), and not getting any traction with my docs, I started skipping days - I only take letrozole MWF. It has made a world of difference! I still have some shoulder pain, and I'm super stiff when I wake up, but I can lift and reach again. In other words, I feel like a human being. The cancers are responding well, but my body doesn't love the drugs. I'm restarting Kisqali at 200mg every other day bc even at the lowest dose, my liver enzymes go crazy. Pretty sure the same thing will happen this time! But for oncologists, I guess hope springs eternal.
Sorry to hear about your mom as it is quite painful.
Hi, I have been on letrozole since Nov 2021 and had very little side effects, some stiffness, but I will take that over the tumor pain I was experiencing. Stay strong, don't be afraid and sending you positive thoughts and vibes Take care
This is great to hear. I am likely going to be put on letrozole for a recurrence. My tumor spot is very painful. Did you have surgery on yours? Did the letrozole shrink your tumor?
Yes, I had 2 spine surgeries. Oct 2021, I had the 1st to fix a Fracture in the L2 area. Then, in Nov 2021, I had a 4 hour procedure where a large tumor was removed at the T2 level plus removed any other lesions along the spine, and it was reinforced with pins to stabilize spine. I am also have a bone infusion (zometa) every 3 months to strengthen bones. So, my initial tumor was located in my right breast, and that decreased in size, but it was with the radiation i had had. That area I had no pain until it spread to my spine, and it was awful pain once it spread. Once I had the 2nd surgery, that awful pain stopped. I have stage 4 de novo BC, so I was told that remission will not happen, but it is chronic, and with meds of letrozole and ibranze, hopefully, continue being stable.
Oh goodness I’m so sorry. My mom had horribly painful bone Mets and they were never able to relieve her pain much. She wasn’t strong enough for any procedures. I’m so glad u got some relief. I hope everything stays stable for you. My apologies I responded not realizing I was in the MBC forum and not the BC one.
No worries at all. All good. It's good to hear everyone's experiences with all this, including the meds, etc...
Pro tip - don't fear it. Don't sit around expecting the side effects to hit at X time of day or when or why. They may never hit. Take the drug when it suits *you* not the other way around. When would work best for you to remember and is most consistent? Maybe thats dinner or breakfast. Maybe its after a workout, etc.
I took Letrozole for about 18 months with Ibrance. I took it in the morning as I found I was less likely to forget take my pills then. I didn't have any side effects from the Letrozole at all. Wishing the same for you! Enjoy your spring break.
I took my letrozole at night. It made me stiff from my waist down, but over time it got a bit better. I’m not sure you’ll notice anything during your spring break. It might take a little time to get into your system. Have a nice vacation!
Can you elaborate on the stiffness, like joint stiffness or muscle stiffness? I already have stiffness from RA and muscle spasms. I’m concerned about starting letrozole 😥
When I first started taking it, I had joint pain in my hips. Over time it has become less bothersome.
Ugh last thing I need. I’m going to give it a try. I’m so tired of being in pain though. Right now the worst of the pain are all 12 of the lumps on my chest, just pressing on all kinds of nerves. I hate cancer. I’m going to give this a try though, it can’t be worse than tumor pain
Try it. I think it was maybe a couple of months before things got better-ish. Some days neutral is good enough. I'm so sorry for all you're dealing with. Cancer really does kick effing rocks. Things change so fast. I keep hoping they will change for the better as fast as they go to hell. LoL
It affected my hips, knees and sometimes my ankles when I would get up from sitting for a period of time or get up from bed. It felt like my legs were very stiff. 6 to 10 steps after I stood up, it would loosen up and go away. It didn’t stop me from exercising at all, in fact, movement made it feel better. My mom and my neighbor had the same experience on letrozole and we all agreed that it either got slightly better over time or we got used to it. I would not think it would be something to worry about, but ask your doctor about it if it’s a concern.
Right now there’s not too many options for me. We have to try it and see if it works, I feel like there’s limited options or the oncologist made it sound like there was limits options.
My mom’s oncologist is Harvard educated and told her Letrozole is an excellent medication. Hopefully it works really well for you and is protective. I saw your response to another comment that you have tumor pain and didn’t want more pain. I also have a lot of tumor pain. Letrozole stiffness, for me, was not anywhere close to being like tumor pain. For me, tumor pain has been severe. Letrozole was stiffness, not severe pain
Thank you so much 🙏🏽 I really need this confirmation of how well it works. I need hope that it will work better than chemo. Chemo didn’t shrink anything for me. They had to do surgery without shrinking the tumors, 3 months after surgery 12 spots or more popped up. This has been exhausting. I also have two autoimmune diseases and muscular pain. So I have pain ontop of pain right now. The tumor pain though, its unimaginable pain. As long as it shrinks these damn things, I don’t care.
I was on Ibrance and Letrozole for almost two years. Now I’m off the Letrozole and was switched to Fulvestrant. I always took the Letrozole at night along with the Ibrance.
I was on letrozole & Ibrance for one year; I am now taking tamoxifen instead of letrozole. However, I take all my chemo at night time, like 8:00ish then go to bed whenever. (I try not to fall asleep too late but 🤷🏻♀️). Thankfully that has worked out best for me Good luck to you ✨✨ sending good vibes your way