Body aches ......is it Ibrance? - SHARE Metastatic ...

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Body aches ......is it Ibrance?

Fight2016 profile image
17 Replies

I have been on ibrance for almost 3 years now. A pattern that I have noticed is body aches as I get closer to my day 21 on that cycle. They aches range anywhere from 1-7 days and the degree of discomfort tends to vary. Has anyone else noticed this? What has your oncologist said?

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Fight2016
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17 Replies
4thTimesTheCharm profile image
4thTimesTheCharm

Possibly. I have needed to discontinue Ibrance/Faslodex after 20 months to move on to new treatment. Now off it for two months, my joints hips, shoulders and ribs are so much less sore that i can now again rest on either side to sleep...with support pillows anyway. So , yes, perhaps the Ibrance.

Hi Fight2016,

What are you pairing the Ibrance with?

When I was on Ibrance + Letrozole, I had pretty bad joint pain, especially in my knees, like had to walk up/down stairs sort of sideways. I wasn't thinking well (a common issue for me.. :) ) and attributed it to age/inherited bad knees from my Dad, never mentioned to my doc and just thought of it as a nuiscance. But after I switched to Faslodex, it disappeared! My knees are fine...great, in fact!

I also have a friend who has had really debilitating issues with her hands/fingers on this combo..

So, I'm tossing the Letrozole out as a possible culprit, but the timing you describe re: the cycle does seem to point toward the Ibrance...

Good luck with it! I hope you find a way to manage the pain...

Lynn

Fight2016 profile image
Fight2016 in reply to

I’m paired with letrozole

Kiera49 profile image
Kiera49

I was blaming denusumab for my aches in shoulder joints, but now I have stopped Ibrance and letrozole my pains have gone away, not sure which one it was

illini9 profile image
illini9

I am also on Ibrance/Letrezole/Xgeva. I have joint pain and have always assumed it was the Letrezole. It's never the same day to day or week to week. I do a lot of yoga for it, walking, and take some vitamin supplements as recommended by my onc.

geewisdom profile image
geewisdom

Same here as I am on Ibrance/Faslodex/Xgeva, two weeks on 1 week off. I always experience pain a few days after I start the cycle up to the last day. As soon as I am off cycle, pain goes away. Pain in my shoulders, pelvic and sometimes foot. I would have to contribute this to Ibrance.

Yes, I have been on 125 mg. Ibrance + 2.5 mg. Letrozole for over four years, and I have a great deal of arthralgia (joint pain). I don't know which medicine should take the blame, but I believe both of them have arthalgia listed as common side effects. In the morning, I can hardly walk because my feet hurt so much for the first 20 or 30 paces—and then after that my feet are fine. My hips hurt just from sitting or being in the car for a long ride. My back is stiff and starts to hurt if I am up and about for more than 30 to 45 minutes. I could be wrong, but I think it could be the Letrozole, the aromatate inhibitor, that is more to blame; it is vacuuming up the excess estrogen that might be floating around. I had my ovaries yanked over 20 years ago at the age of 39 (when my breast cancer progressed to stage III). At that time, as I was plunged into instant surgical menopause and my joints were robbed of most estrogen, I noticed the onset of my arthalgia symptoms. Then, four years ago, when I started taking Ibrance and Letrozole, I noticed another increase in painful joints. I take Ibuprofen sometimes, like when I know I'm going to be cooking and on my feet for a long time.

Teddielottie profile image
Teddielottie in reply toLynn-in-California

I believe my stiff joints are also due to Letrozole , and I get stiff hips when sitting in a car on a long journey , or going for a long walk , especially if it’s not flat , stiff feet (for the first 20 paces each morning like you mention and my family describe me as an elephant in the mornings !! ) . It doesn’t affect me on my e- bike rides tho’! I take a glucosamine every day , but not sure if it makes any difference ?! x 🚴‍♀️

For me the letrozole and anastrozole that I was on before the the change to faslodex caused a lot of joint pain . At one point we had discussed radiation for pain treatment .

Once I had progression I was switched to the faslodex and the joint pain is 80% better.

Klamato profile image
Klamato

One of the side effects from these drugs is joint pain! I was told by my doc to take Tumeric! My daughter is taking it for RA and has noticed a great difference. They said it would help me, but I’ve to get the right brand be they vary greatly! I will post it when I find out!

Fight2016 profile image
Fight2016 in reply toKlamato

Thanks so much!

Mindysooty profile image
Mindysooty

yep, me too ladies - on Ibrance/Letrozole for 14/15 months now - noticing joint pain more now. My fingers can be quite cranky and sometimes I can struggle to open tight jars. That said though, I was having a conversation with a group of my friends and we were all saying the same, all aged mid 50s, and we're all like creaky gates one way or another - used to boogie the night away dancing, now we've all on to get up the blooming club steps lol.

But yes, I think the Letrozole doesn't help. Take care. x Josie x

in reply toMindysooty

So pleased I read this Josie. I can’t open jars either and have the same issues. Aches and pains. I love the week off as I feel almost human again. I’ve started dancing to the ole records we have. Soul, Motown etc. It’s so comforting.

Glad you posted.

Cheryl

Annadm profile image
Annadm

Yes! Around the same time as you, I feel like I’ve got beaten with a baseball bat. But Advil helps. Are you on Letrozole also? I am and that doesn’t help either. It’s known to cause bone and joint pain also. Good luck and remember... you’re not alone!

Fight2016 profile image
Fight2016 in reply toAnnadm

Omg! Thanks so much for replying. I have literally uttered those same words to friends of mine. “I feel like I have been beaten by a baseball bat.” I am on letrozole as well. My ANC is now super low and my onc has advised instead of the traditional one week off of ibrance .....he think I need 2 weeks off to “build back up.” Thanks for your reply

Annadm profile image
Annadm in reply toFight2016

You’re very welcome 💕

Hi, a little late in replying but yes, I have exactly the same. Sometimes mood swings as well. They seem to have subsided over the past 18 months. I’m back on meds after my week break and the body is aching now. It’s hard but we have to go with the flow. Take care

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