Just because it doesn't happen often- doesn't mean it hasn't happened to you!! I was told that my tinnitis was due to one of my chemo drugs, but it only happened to maybe 12%. I asked the oncologist if he would be reporting my case- if the answer is no, and others are not reporting it either- then we know the 12% number is too low!! Now, some studies are saying it could be as high as 17%

I agree with JM, you need a doctor who listens to you. Dismissing your pain, and not investigating alternatives is unacceptable, and in my opinion, unprofessional.
Gentle hugs!

I am on exemestane and experienced sudden hearing loss after 1.5 months of starting it - although my oncologist and ENT both said there is no evidence the drug caused it. However it was the only "new" thing. My hearing did eventually come back after multiple steroid shots but I ask have hearing sensitivity.

I started to lose my hearing at about the 8 cycle mark of a 12 dose Abraxane treatment. We temporarily halted it while Audiology checked it out and I began a series of interaural steroid injections because my hearing had, indeed, diminished. My hearing did rebound although I have some permanent tinnitus.

As for peripheral edema, there is a 2021 paper, published in the British Journal of Clinical Pharmacology, that identifies aromatase inhibitors as one of numerous classes of drugs causing peripheral edema. My medical oncologist listens to me but it's just not something that he's heard of or seen in the 40 years of his career at a top university. However, he did refer me to the cardiac oncology specialist, where it was determined that I did not have heart failure. I'll share the publication with him during my next visit.

Thanks everybody for your valuable input.

@A MyBCTeam Member What is WRONG with your DOCTOR? Why is HE/SHE NOT LISTENING to you? It sounds like it is time to locate a NEW DOCTOR that will PARTNER with YOU. YOU know your BODY and it is HE/SHE job to help you to feel better.
I do NOT care if 1% of patients get a side effect. If you are having that side effect than it is present and it should be VALIDATED and DEALT with IMMEDIATELY. YOU are in PAIN.
Have you tried the other Aromatase Inhibitor drugs? There are 3- Anastrozole, Letrozole, and Exemestane.
You are going to have to FIGHT for you RIGHT to have a PAIN free or LESS PAIN treatment. I would suggest you call his/her office and speak with his RN and explore options. THIS IS CRAZY.
YES, I believe it is the AI drug causing the issues.
If you would like, I have some things I do to combat the side effects of the AI drugs that have helped me JMonkman.

Sending positive vibes to you! Reach out with more questions or comments!

Mentioned Users

A MyBCTea...

I have severe joint and bone pain and now along with the severe hip pain where osteopenia has developed I now have tendonitis which a MRI confirmed. YET my Oncologist said tendonitis is not confirmed being caused by Exemestane. I read though that there are reports of women getting tendonitis from taking Exemestane. Doctor rebutted stating the percentage of those reports is too few to blame Exemestane!!

WELL, out of the blue, after taking these AI pills I now have severe pain in left hip with osteopenia AND tendonitis showing up on MRI yet Exemestane is not to blame for this painful tendonitis!!!