Hi Everyone


I’ve been through chemo and radiotherapy and am now on hormone therapy. I’ve had an MRI and I’m all clear. My problem is lingering side effects. I had 3 x EC and 9 x paclitaxel. Right from the start I experienced a numb feeling in various parts of my body. There was no real pattern to it but paclitaxel added the PN kind of numbness which made things worse. I also developed balance problems. 9 months on, I’m still experiencing it all to some degree (with the added HT effects). The MRI revealed no nerve damage so the only explanation has to be chemo. But my oncologist is insisting on a referral to Neurology at a time when I just want time off from f* hospitals!


Please, has anyone else experienced numbness? What kind? Has it gone away in time? Has anything helped it? I’m trying acupuncture right now. Hope someone can help. Thanks, Jan x

Hi, I had painful numbness in my back and chest following one of my surgeries (mastectomy and bilateral reconstruction). My consultant tried me on nerve pain medication to see if it would help with the symptoms. They didn’t check with an MRI to see if it was nerve damage. I found the medication did improve my symptoms and after a few years they had improved to the extent that I no longer needed to take the medication. I was on Pregabalin. The numbness felt more like an electric shock / bee sting at times though with general constant background numbness so I don’t know if that’s the same thing as you’re experiencing? My back, right armpit and right upper arm remains numb 15 years post surgery as in numb to the touch (it kind of feels like someone is touching me through a very thick jumper) but I don’t have any pain with that numbness so it doesn’t bother me. Xx

Hi Jan. I have been having similar issues with odd numbness but mainly around my face as well as tinnitus/low pitched buzzing and vertigo/dizziness which seems worse when I am tired. I had a brain MRI 5 weeks ago which showed some lesions which the neurologist said were “metabolic” and due to Paclitaxel. I had the scan the same day as my 10th and last Paclitaxel. He wants me to have another scan which I hope to have soon as the tinnitus and vertigo seems to be getting worse despite stopping treatment. It doesn’t make sense that there is another cause but I’ll be glad to check these lesions aren’t getting bigger. Otherwise I guess it would be helpful to know if the symptoms get better over time - hope you’re are starting to improve?? 

I had a mastectomy last August and started treatment with Taxol and Herceptin in October. I had very serious side effects with the chemo and was put on weekly Taxol. This also made me very ill so I was taken off the chemo and just have 3 weekly Herceptin injections now . I have had 12 so far. I have had severe numbness on my mastectomy side ever since the op. Some of the sensation is back but there is numbness under my armpit and around my back. I have also had neuropathy in my hands and feet and numbness and pain in my left leg. Thankfully the neuropathy seems to have settled now and is not giving me much trouble. I also have tenderness and pain in my rib cage and shoulders which stops me sleeping. I am 9 months into treatment now and some days everything hurts. I don’t think any two people are the same on these drugs. I take paracetamol because I can’t take ibuprofen and do a bit of yoga every day to try and keep myself mobile. I also do some Zumba online to cheer myself up and get the heart working!! Some days it seems like a hard slog but we are lucky to still be here. Try not to give in to the aches and pains and don’t let them define who you are. Good luck with the rest of your treatment.