I was diagnosed Metastatic BC with a lot of bone mets back in June 2022. The Letrozole and Ibrance eliminated the visible bone mets and pain was better. Last scans still show no progression and those were just a month ago or so. The last few weeks I've had terrible pain in my knees, left shin, and left hip and the pain is much worse at night.
X-ray doesn't show much degeneration anything. Wondering if anyone else has had pain side effect increase from meds after a few years?
Hi
I'm on those meds for 3yrs now with monthly Zoladex implant too.
I'm in a very similar situation to you regarding diagnosis, age and symptoms.
I get various joint and bone aches. With me it's usually in the hip/pelvis socket, shoulders or thumbs and fingers.
I find it comes and goes away again after some weeks.
I've asked my oncologist what's causing this and she said its the Letrozole.
I'm also extensive bone mets with stability.
I find pilates helps to ease the pain and I try and eat a lot of anti inflammatory foods....that "eat a rainbow" type of thing where I have loads of fresh seasonal veg and fruits etc... I avoid supplements as I've had issues with my liver function in the past and so I try to limit any extra load on it. I only take a calcium/D3 tablet daily that my oncologist prescribed.
I find humidity seems to trigger some of my joint pain...but in those cases things ease off as the weather changes.
Epsom salt baths help a bit too...the magnesium in them sooth the tension in surrounding muscles...but when the pain is very deep in the bones it doesn't do much.
Hope you find some relief...Good news for us both is that the meds work currently and have stabilized the mets!!! I've just had scans yesterday...mamo, ultrasound and CT. The breast scans show all trace of primary has gone...Still waiting for the CT results.
Take care, wishing you all the best!
Zoe
Hi there,
Sorry to hear about your pain. I’ve been on Ibrance and anastrozole for over 6.5 years, and yes, I feel pain in my hips and thumbs and other fingers too. Swimming is my best pain reliever.
Corby
I’ll try to swim more. Was swimming a lot and then the schedule was difficult so maybe the decrease in swimming is a factor. Thank you
It's been a year and a half for me. I wake up at 5 in the morning with terrible burning pain in my hips. Seems to only bother me at night. I take Advil before going to sleep, but I still wake up in pain. It's been like this for a few weeks. I also eat well, get massages etc but nothing seems to be helping.
Sorry to hear you have terrible pain. Sadly it is comforting to know it is not just my imagination. Keep fighting.
Yes, the Letrozole eliminates oestrogen which is a natural anti-inflammatory so when it's not there you get joint pain and stiffness. Some women say different brands of letrozole cause more/less pain so you might need to try a few.
Thank you !
I too get significant pain. I have been on Ibrance (palbo) and letrozole for almost 3 years with 3 monthly Denosumab. My feet are most challenging to deal with although have pain in ribs and hands. I maintain fitness levels but it’s hard work. I’m in the uk and my oncologist doesn’t recognise feet and hand pains being connected with medication.
Thank you for the info. Sorry the oncologist doesn't recognize it being connected. Hoping the pain gets better.
My oncologist doesn't think my foot pain is connected either. I was on arimidex for five years and had awful plantar fasciitis. When I stopped Arimidex, it was gone and hasn't come back. Right now I'm on letrozole and Ibrance with pain in my feet and toes when walking - letrozole is probably the culprit.
Hi, I have been on letrozole and Ibrance for 4 years and have noticed more joint aches and pains in the last few months. Nothing unbearable and could be normal aging as I am almost 65, it is annoying though.
I had this when I was on this regimen. Another woman in this group recommended taking a Claritin daily. What a difference it makes! It will take a few days to kick in but for me the results were amazing. Good luck!
I have been taking Claritin daily from the beginning so I can't say it has or has not helped. Mine seems to be in my hands/fingers but more stiffness in my ankles and feet (my scans show degenerative areas in my ankles) the worst is in the morning when I first wake up. I started taking Letrozole in 4/22 and switched to Exemestane with no change of stiffness side effect.
Thank you so much for taking the time to reply. So switching to Exemestane didn't relieve the pain? Same side effects with different medications?
That was the case with me. It didn't change anything. Again mine is more stiffness than pain particularly in the morning. So maybe the Claritin is helping. I will say I try to drink a lot of water and stay away from refined sugar. When cooking I sweeten with either monk fruit or maple syrup.
I have been on Ibrance/Letrozole for over seven years. I blame old age (78) on my aches and pains, but you younger folks, it seems more likely that the medication is causing the problem. Best wishes! Hannah
Glad to hear you have been on it for 7 years. Thank you!
When I was taking Letrozole I had terrible joint and muscular pain.
Hi! I'm sorry to hear about your pain, and I very much understand. I have been on many protocols including an extended time with Letrozole/Ibrance. After many years I've developed terrible bone/joint/muscle pain even though my markers are at normal and my scans are NED for years now. It seems like each protocol over the years enhanced the pain. I take Tylenol for the pain (can't take NSAID's because cancer found it's way into my stomach so now it's banned for me), but what I have found very helpful is acupuncture. I did some serious research and found a wonderful Chinese M.D., Ph.D. here where I live and she has been amazing at helping me keep the pain under control. So much so, that I had been on oxycodone for a long stretch, and now I have not had to use it in over 4 months. Wishing you wellness, and hoping you find a way to feel better, take care.
Thank you so much for the information. Glad to hear you are NED but bummer the pain continues. Thank you for sharing what has helped for you. Fight on!
Pour ma part j'ai exemestane, c'est aussi un anti aromatase, j'ai de très fortes douleurs dans les genoux, la hanche gauche et l'aine qui m'empêchent de marcher, donc pour le moment deambulateur et chaise roulante sont mes amis. Par contre les métastases se sont stabilisées, entre la peste et le choléra il faut choisir! 😡
Yes! I developed severe pain in both knees after being on letrozole/Ibrance for over a year. My Onc switched me to anastrazole but there was no improvement. They decided the pain was from arthritis and even sent me to physical therapy. That did nothing so for the next year, I just dealt with it. Taking Tylenol. But my mobility was next to none bc of the pain. Last month, I developed an infection in my abdominal cavity. They took me off of the cancer meds. I'm supposed to start IV treatment next week. Since I've been off of ibrance/anastrazole for a month, I have no pain in my knees whatsoever. I'm disappointed in my care team for not listening to me. At my check-in appointment, The only thing that I would complain about was the fact that my knees were killing me and they would just look at me and shrug their shoulders. I feel like they were assuming that I was trying to get some sort of painkillers or something out of them. I literally spent the last couple of years stuck in my home.Not able to do very much because of the pain. Only to wind up having to do infusions.Anyway it's very frustrating.
Sorry to hear that. Hope you get some relief.
I have been on ibrance/letrozole for 6 years and I too have joint pain that comes and goes. Hips are the worst for me. I am not much of a swimmer but I decided to try working with a personal trainer on strength training. I just started about a month ago and progress is slow but I am determined to give it a go!
The last 6months I have hip pain, but only on walking. I am 6 and 1/2 years into my metastasis.
I was on Ibrance and Faslodex (anti-estrogen injections) for 8 years... I needed strong pain meds to control the pain from these drugs. The pain has eased up a good bit since I have had to move on to another medication six weeks ago. Best of luck!
that is great to hear the long run on Ibrance. It’s not working after 6 mo sadly. What are you on now?
Yes. If you read the fine print on the enclosed printed information, arthralgia (joint pain) is the most common side effect.
I have been on Letrozole and Ibrance since January 2018. I have quarterly Zometa infusions. I've been fortunate to have really good results with no new issues on this plan. I take a daily Claritin - it helps with bone pain. I have found that the pain comes and goes. Recently I have added tumeric to my daily meds. I've learned that this is part of the process and it beats the alternative. I take needed breaks as needed. Good luck on your journey.
yes. I am currently on ketrozole for nearly 7 years and I was just thinking the other day that I have no joint /bone pain at all…the reason I thought that was that Letrozole has caused on and off joint and muscle pain starting about 1.5 years in and some years increasing very badly … in all the places you mentioned; but my scans have been stable for 7 years — that hip pain at night thing you describe — yes I had that for nearly 6 months and it was so bad. I don’t have it at all anymore …
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Bone mets
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