Has Anyone Else Suffered Brain Damage from Exemestane?

[needabreakfromcancer]

Have any of you suffered brain damage from Exemestane? Mine is extensive and seems to be getting worse. Make sure that your doctor is aware of any vision changes, dizziness or balance problems. Also make sure that you doctor is aware that this can be a side-effect of Exemestane, my doctors were not aware of this possible complication. Doctors are not properly trained about drugs in medical school according to Lisa Ling.

[mariootsi]

Omg! That's crazy! They should know these things!

[Rhwright12]

Had the same issue with XGeva...I just didn’t feel right...a little confused and difficulty concentrating...so Onc ordered a bone scan as a roundabout way to scan my brain...🙈😱🙈...And then like u I regoogled side effects and sure enough...#4 confusion! 😂

Seriously they’re sitting at the computer why not just google side effects of XGeva while you’re sitting there if u can’t remember? 😀

[PJBinMI]

As a long timer living with mbc, and on third line tx of exemestane for about the last two years, I'm not so sure that it's primarily a problem of our oncs "not knowing" but the complex issues around drug trials, post trial tracking of side effects, and putting all this info together. Oncs are so burdened with paperwork that alot of them don't report the side effects their patients expereince to the drug company and the FDA so alot of this data is years behind. And so many of us are older and on meds for things besides cancer....... I'm on 11 rx meds that I take daily plus a couple of over the counter meds (anti-histamine, anti-acid stomach) and only one of them is for the cancer itself. I'm one of those who developed serious lung problems from Ibrance and those continue though I've been off Ibrance for over 3 years, and the lung problem caused a-fib. The whole system takes alot of time to figure some of these side effects out--now there are additional warnings for those on Ibrance and some of the other newish targeted drugs.

[needabreakfromcancer in reply to PJBinMI]

I am actually fortunate enough to not be on any other drugs. I was diagnosed by a balance doctor that told me that some drug that I was put on, she thought it was probably a chemo drug, had caused the brain damage that I am experiencing. Turned out it is the Exemestane. Lisa Ling did a program on benzos and interviewed parents, around our age, whose son had committed suicide, which can be a common side-effect. When she interviewed the doctor and asked if he was aware of this, he yelled and said that it isn't the doctor's responsibility to know the side-effects, but it is the patient's. Lisa was flabbergasted! She then interviewed a psychiatric nurse who said that though it is unfortunate, what the doctor said is true. She said the reason is because doctors are so poorly trained in medical school about drugs. They are also poorly trained about nutrition, receiving only about 12 hours of training. Perhaps if medical schools did a more thorough job of educating doctors, cancer would be easier to conquer.

[Sandig1948]

I too am suffering The effects of Ibrance and letrozole which has virtually destroyed my lungs and certainly shortened my life.I was on this combo for 18 months.

Sandi

[Arisgram]

I'm sorry you're having this issue. I'm also on exmestane... since February....and I've been having dizzy spells lately. I also have this weird sensation of chills... but no shiver. I'm becoming concerned. Are these symptoms familiar to you? Thank you and happy Thanksgiving!

Andi

[needabreakfromcancer]

I am not experiencing chills. However, the dizziness seems to be getting worse. It says on Pfizer's web page about Exemestane, that if you are having vision problems, are dizzy, or are having balance problems, to call your doctor immediately! I had two oncologists and neither was aware of this. Neither was anyone in the nursing/chemo departments of either breast cancer center. I am going to start vestibular treatment soon at home, which I am desperately praying works. This has taken away the quality of my life. It says on the drug info label, which I just noticed, that it may make you dizzy. Be very careful! The dizziness has made it almost impossible to balance myself to walk. It is a nightmare! Wishing you wellness and improved, good health! Happy Thanksgiving to you too!

[Barbteeth in reply to needabreakfromcancer]

This dizziness is very concerning and debilitating for you...I’ve had dizziness on and off for years and it’s the most awful thing...I’d rather be in pain than that

My oncologist has mentioned exemastane as my next line of treatment when Ibrance/letrazole fails and from what I’ve gleaned on here has really put me off taking this...anyway there may be something else I could have

I feel so sorry for you...surely this can’t go on...there must be something else you can have....have you tried the exercises for dizziness...I can’t remember off hand the name of the technique but it helped me in the past

Barb xx

[Barb5]

I was on Exemastane for 3-4 years I didn’t know that was listed as a side effect but I definitely have trouble concentrating and with memory guess I know why now.

[needabreakfromcancer in reply to Barb5]

It says on Pfister's website that if you have vision problems, are dizzy or are having a problem with balance to tell your doctor immediately! I told two oncologists and neither had a clue! I have gone to a balance doctor and have been diagnosed with brain damage.