Paclitaxol and neuropathy - decision to stop

ScotinAus

Hi there,  
 What are people’s experience with weekly taxol treatment and neuropathy? 

I’m currently having weekly taxol + Herceptin for a recurrence of HER2+ BC. 

I’ve manage to do 8 taxol infusions but the neuropathy is getting tough. I’ve already had a 2 week break and steriods but the pain keeps coming back. My symptoms aren’t only in my hands and feet, I also feel like I’m being stung all over my body at times. Pressure and drying off after a shower can set it off too. 

My oncologist is talking about stopping the taxol and I’m meeting with her next week to discuss. 

Just wondering if anyone a had any experience stopping taxol early (I’m supposed to have 12) and how you felt about weighing it all up? I’m exhausted by the side effects but also want to have the best chance that this doesn’t come back a third time! 

Thanks!

Mez_BCNA

Hi @ScotinAus - attaching an article on the topic from our resource library that you may find helpful while we wait for other members to provide their own lived experience to support you.

Peripheral Neuropathy
https://myjourney.org.au/article/25209

All the best with your treating team discussions next week, it must be a very challenging time to say the least.

cranky_granny

Hi @ScotinAus. I had to stop in week 8 of the Taxol. I am not sorry i did. I still to this day have the residual numbness in my hands and feet 7+ years on. I hate to think what it would have been like if I stayed the course to the end. I cant stand for long or walk long distanced due to the pain. All the other areas of concern returned pretty much to normal. 

To me it was a matter of quality of life and what I could put up with. 

It’s a hard decision to make thats for sure and one only you can make under the best recommendation from your treating team 

Afraser

I stuck it out for all 12 doses (a scare about a new lump fuelled my decision but it was quite benign!) but I do have lasting and probably permanent damage to my feet (hands are fine). I don’t regret my decision but the question of what constitutes a therapeutic dose is an interesting one and to an extent 12 doses is doing everything you can but possibly more than you absolutely need.

But the rub is, like so much of cancer treatment, it’s hard to know precisely about individual cases. However on the positive side, pain in my feet only lasted a few weeks. The damaged nerve endings result in odd sensations and occasional discomfort but no pain, stinging, burning etc. 

I’ve just celebrated 12 years clear. Swings and roundabouts!!

Discussion with your oncologist is the way to go, best wishes whatever you decide. 

Katie46

Hi @ScotinAus, I had a 30% dose reduction after round 8 because of severe persistent mouth ulcers and some neuropathy in my fingertips. I also had a 2 week break. My oncologist told me they were happy to get me to round 8 at full dose, and if my mouth ulcers came back they'd more than likely stop the treatment. The dose reduction worked for me and I managed to finish all 12 sessions, I don't think I would have been able to without the reduction.

A discussion with your oncologist is definitely the best course of action.

ScotinAus

Thanks for sharing @Katie46 @Afraser @cranky_granny.

Whilst I’ll be making this decision with my oncologist, it’s definitely good to hear others experience. 

Thank you! 

ScotinAus

Mez_BCNA said:

Hi @ScotinAus - attaching an article on the topic from our resource library that you may find helpful while we wait for other members to provide their own lived experience to support you.

Peripheral Neuropathy
https://myjourney.org.au/article/25209

All the best with your treating team discussions next week, it must be a very challenging time to say the least.

Thank you for the link! Super useful.