Paclitaxel - dizziness and tinnitus

Hi. First post ever on a site. I’ve had EC and then Paclitaxel for lobular breast cancer. I started having slight dizziness and change in my vision on and off from week 2/3 and it got gradually worse. Then started to get low buzzing tinnitus and numb on the sides of my face. I stopped treatment after 10 of 12 planned after an MRI scan showed some changes on my brain. Neurologist thought this was all related to Paclitaxel and should stop once treatment stopped. That was 5 weeks ago. I did start to feel better but the buzzing has come back much more severely as well as numbness round the face. Just wondered if anyone has had any similar effects around the head with Paclitaxel as my oncologist and neurologist feel these are definitely side effects though have not had patients reporting these effects before. Thank you


Hi Jen

I’m sad to admit I was delighted to read your post and find a fellow sufferer! Of course I’m sorry you’re going through all this rubbish - the treatments are bad enough without the side effects. Oncologists are reluctant to accept unlisted side effects are attributable to their precious treatments, even when the timing is so obvious. I had my chemo Dec 2018- April 2019, with 6-monthly zometa infusions. A year on, I am a walking talking mess of side effects, primarily joint and muscle pain which we (those I’ve consulted) suspect may be the zometa infusion. Hmmm. However, no one seems interested in claiming ownership of my minor facial problems. I do have a referral to Neurology for my impaired balance (made in December but…) but to me it seems likely it was all caused by the EC treatments and exacerbated by paclitaxel as that was the timing of the onset. However, my MRI was completely clear. I’m waiting to be told it’s imagination lol.

The problem I have is like I have had a tiny stroke. It’s barely perceptible except when I am tired or it returns out of the blue if I’m fatigued. My right eyebrow is now lower and my eyelid heavy. My cheek sometimes tingles and my upper lip swells inside while my philtres sags, so my mouth droops on the right and I lisp. My tongue and hard palate feel a little numb too at such times. Unfortunately, other muscles are affected in my body. All of this started with EC treatment however. The numbness of peripheral neuropathy I think made it worse. The PN is definitely going away at long last but there’s no sign of my mouth improving.

It sounds like you have more open-minded consultants than I have. It makes me furious that, just because no one has mentioned it in XX years, it’s not real. Once the crisis is over, I’ll persist again. Mind you, if the PN is going, maybe all this will too. Please don’t measure yourself against me - we are all different - but 5 weeks does feel like early days for pronounced side effects to go away. Keep hoping and weigh it against being cancer-free. It’s worth it then! And please keep me updated.

Jan x