Has anyone experienced long-term effects from Paclitaxel and/or EC therapy? I have what I guess is mild peripheral neuropathy, with tingling fingers and toes, sometimes numb knees with tingly nerves running down the outer side of my tibia to the outer toes. However, I also have a swollen and numb upper lip (who needs fillers!), some numbness of the mouth and some numbness inside my body, only noticeable if/when I need a pee or a bowel movement. I have read that these are normal effects and should wear off. I only really noticed them in the second week after I’d finished chemo but my oncologist says the steroid would have disguised it and, looking at the diary I kept, I did have signs starting with EC, but worse with Paclitaxel. In addition, I have mild problems with balance, wobbling a bit when walking, and I have a gruff voice from radiotherapy, with mild swallowing problems. All of these come and go with no detectable pattern.
Does this ring a bell with anyone? The oncologist is insisting on an MRI scan which seems excessive (let along terrifying) to me. I know it will be a reassuring health check but, apart from waving the BCC leaflet at her, it would be great of I could report that others have experienced the same.
Hi
i have just finished 8 rounds of chemo, the second four rounds were paclitaxel. I’m 10 days after end of treatment and I have slightly tingly fingers and toes at times but nothing else you mention (as yet!). I start my radiotherapy in a couple of weeks so I think you must be further along than me. Very best of luck and hope things improve for you x
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Hi Jaybro, I had 12 weeks on taxol then EC for 4 cycles. When on weekly taxol my body literally went into toxic shock (not sure what else to say) my oncologist cancelled my last taxol hit because my body couldn’t take it. I literally lost all sensation in my toes (now mostly black and my big toes are thick nails now lifting away from my skin) my fingernails have receded on 3rd and 4th fingers and now after 2 months of 6 months of chemo I can slowly start to feel sensation slightly on my toes and fingers. Taxol is pretty harsh on the body. I also couldn’t swallow properly on EC and now that I’m done I feel like my body needs to resuscitate itself back to some normality. I live alone with my 18 year old daughter who was going through her A levels whilst on Chemo. The one thing that help me when my gut was burning up was to take pure aloe juice twice a day. If I woke up at 2 or 3am in the morning I’d scull 150ml of aloe. It really help with the heat in my gut and also helped to neutralise the metallic taste in my mouth. Kudos to you for getting through it. Now about to embark on my second op for breast cancer then radiotherapy. I’m dreading it!
Hello,
I’ve had 4 lots of EC at 3 weekly intervals and 2 of Paclitaxel so far, 2 more to go two weekly. I’m really worried about the peripheral neuropathy nerve damage as I have a numb foot and don’t want it to become permanent damage.
I contacted a Dr who said that it was only stage 1 numbness and that the drug would be stopped at Stage 2. Does anyone know what the difference between these two stages could be? She asked if I felt I was walking on a tennis ball - I’m not.
Has anyone any knowledge of this? I would be so grateful as I’d like to finish the course but don’t want to make my foot worse.
Thank you in anticipation.