I am new here. I was diagnosed last November with secondary breast cancer, a large ovarian tumour, multiple brain tumours and bone lesions. Fun times.
I have been on Ibrance since December 2019 and also Ibrance for the same period. In the last 8 weeks ish I have developed severe muscle pain, specifically in my left shoulder, and left side of neck . Weirdly, I also get pins and needles down my left arm. Anyone experienced similar? Or do you think this is due to me sitting and sewing a lot? It’s difficult to separate out what might be medication side effects and lifestyle! Thanks for any suggestions.
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JoolzD
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Welcome to this site! I'm not on ibrance, so I can't comment on any possible side effects from that particular drug. Are you also taking another aromatase inhibitor, such as letrozole? That can cause muscle pain and peripheral neuropathy. I would talk to your oncologist to see if you can get to the bottom of things.
Hi Joolz, I was on Letrozole and for a week or so had a stiff neck but I think it was more lifestyle than side effects because it went away. I do quite a lot of sewing too so it could be that. Hopefully it’s nothing to worry about. I found an Ibuprofen gel helped. Best wishes x
Thanks Breezie for replyingand for your suggestion. I appreciate it. I’d love to use something like that gel, but because I take aspirin to thin my blood, I can’t take anything ibuprofen related. I was hoping it would just go away but has just got worse. It’s always so hard to know whether it is lifestyle.
Hi again. You mentioned you had multiple brain tumors. How were they treated. Did you have gamma knife surgery or any kind of radiation treatment? Any information would be great as I have just found out that I have 3 brain lesions and would like to know your experiences. Oh I am on Ibrance/Faslodex but changed that to Letrozole for 3 months but that’s another story.
Hi. I had just radiotherapy as apparently I had scores and scores of tumours. Too many to cut out, they said, amd too many to count!! Not exactly reassuring! However they have apparently reduced in number due to the radiotherapy and medication. So I am more optimistic about having a bit more time.
The radiation treatment was fine. I did lose my hair but was not too worried to be honest. The fatigue was the main side effect for me. It came a month after the radiation was finished. I am mentioning it as it quite shocked me as I was not expecting it.
I’ve heard a lot of ladies here complain about fatigue after radiation but I didn’t realize that the onset of fatigue could start a month after the radiation. Thanks for sharing this. I will bear it in mind.
It might be worth getting your neck checked, I have similar pain and it’s the nerves are compressed where they come from the neck to the arm. Have been going to physio and it’s helped a lot. I’m on Ibrance and letrozole but have been told it’s not related- just degeneration. I was referred to orthopaedics and physio in February and am still waiting 🙄I ended up going privately to physio. Hope you get it sorted soon.
Sash that is v interesting. I have just managed to make an appointment with a private physio. So will report back. I am really hoping for a magic solution!!
Yes. Helps to counteract the Letrozole effect on bones as well as the bones that have been effected by cancer. It is a key part of my treatment. I take with Tylenol and a Claritin. They administer it slowly. For 48 hours I feel a little fluish but then I feel so much better.
Hi 👋 I am on Ibrance Letrozole for 22 months I have only bones metástasis and yes I have pain at different place of my body. I take Tylenol o ibuprofeno when I need I recommended you ask your doctors what is the better way for quality life 😍
JoolzD I assume you mean letrozole and Ibrance? I have been in Letrozole for two years and I have had shoulder pain and neck pain so severe that I was sure my cancer was ravaging my body....I had it very severe around the same amount of months in as your experiencing—7-10 months....scams only showed improvements not progressions even with the STRANGEST and very sever muscle and bone pains that would pop up and stay for a period of time then leave and pop up elsewhere. Oh and yes the numb arm/carpal tunnel pains and pins/needles ... all of that. It comes and goes and moves to different areas of body and some periods are worse than others. I’m 49, diagnosed stage 4 bone mets at 46...and have at times felt 79-85. I am hoping and praying your pains are all about the medication and that the it is battling the cancer inside and that you soon grow accustom you the aches and pains associated with the new normal!
Welcome to this site. I was on letrozole for almost 5yrs. prior to mbc diagnosis. I found it to be diffficult to tolerate. I experienced stiffness, muscle pain and and tingling. Hated it. Maybe your doc can give you a different med that will cause you less side effects.
If I can’t get any relief from the symptoms after following advice here, I think you are right that I need to ask about alternatives. It’s weird as I did take Letrozole when I had cancer first time round. I used to suffer hot flushes and sleeplessness at that time but no muscle pain . This is far worse to be honest.
Welcome to the family. Mine went from breast to lungs. I take Ibrance/Letrozole. I have some aching but attribute it to old age. I am 74 - quite a bit younger than you but who knows. Best wishes for relief. Blessings Hannah
Thanks for the welcome! It is hard isn’t it, not knowing what is age related wear and tear and what is the cancer?
I am 61 now, so not a spring chicken, but I have tried to keep fit over the years. But I think this whole COVID lockdown has meant it has been hard to keep active and so my body is cracking up!!
Hi, I think Ibrance causes a lot of muscle pain. Alongside Letrozole you feel yuk. I started to crotchet a blanket during lockdown now I have had to stop as my right arm and wrist swell considerably. Also my shoulder feels bruised all the time. I sometimes have pins and needles in my arms and lots of cramp in my legs during the night.
What a sorry state of affairs really. I hope this info helps a little. Let us know how you get on with your Oncologist.
Thanks very much for sharing all that Cheryl. It is reassuring to know that what I thought were my weird quirks are actually proper symptoms that others have too.
I am really looking forward to seeing the Oncologist (actually talking on the phone), and seeing if he can prescribe anything to help.
Sorry you're on the site, but nice to hear from you. I was on Ibrance for about 6 months until it stopped working for me. I hope that doesn't happen to you.
I didn't have any side effects like that from Ibrance. I've had it from radiation and neuropathy from chemotherapy though.
Thanks Lynn. I am sorry that you are here too. But it’s a good group of people, definitely. It’s possib;e that my pain is also from radiation. When I had Letrozole before I had no muscle pain. So I guess it could be caused by radiation too.
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I was on Ibrance for about 6 months until it stopped working for me. I hope that doesn't happen to you. 
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