Peripheral neuropathy - paclitaxel

I had 12 paclitaxel.  I had no problems with neuropathy until week 9, and then got some numbness and pins and needles.  I’m 9 weeks post chemo now, and it’s more or less gone, doesn’t cause me any issues now.  I did lose two toenails and two others got very sore and are over 50% black so I’m waiting to see if they also come off.  That is also common and may impact the running while you’re having chemo but the soreness cleared up very quickly after I finished.  The nails will take a while to grow back of course, but as a runner and hiker you’ll be familiar with that

Thanks RungirlrunDid you stop treatment or lower the dose when you got the numbness / pins & needles? 

They reduced the last two doses to 80%, but I did finish the full course.

Hi Coddfish

Difficult decisions!  Peripheral Neuropathy is a potential side effect of Paclitaxel but bear in mind that not everyone is affected.  I was unusual in that it started after my first couple of weeks and the oncologist was quite surprised as it was so early.  I took a break between weeks 6 and 7 and my last 5 sessions were at 80% dose to try and limit the effect but my feet were definitely affected and I was struggling to walk around the house a few months after chemo finished.  

I was given the option to stop if I wanted to at any stage as the risk of recurrence in my case was quite low.  I decided to continue to the end in order to give myself the best odds but in hindsight it might’ve been a prudent thing to stop earlier.  Like you, I do a lot of hiking and also play golf, so walking is a big part of my life.  It took intervention from the hospital pain team and acupuncture to get me back on track but now I play golf 4-5 times a week with no issues.  The balls of my feet are still numb 2 years down the line but don’t really cause me any major problems.

The biggest advice I can give you is to let your team know as soon as you start to feel any tingling in your hands and feet.  They can adjust your dose or give you a couple of weeks break, or even limit the number of sessions you have.  It’s a tricky one as we all want to have the best treatment possible to make sure there’s no recurrence but then again we want to be able to enjoy our hobbies once we’ve finished treatment.  The old risk/reward decision I’m afraid!  Good luck with whatever you decide to do

Loffie x

Thanks Loffie Knowledge is definitely power in this. It’s sufficiently worrying that it’s making me seriously consider saying no. The hospital told me around two thirds have symptoms and it’s a significant problem for half of those. I have asked the hospital to clarify how many of that third have long lasting or permanent complications. If I do go ahead I think I would be inclined to stop if I get any sign of it. In a trade off between quality of life and quantity of life, at age 65, I would choose quality. 

Hi Coddfish

I had Docetaxel and was meant to have this for last 3 treatments. I just had the one dose and went back to FEC. 

I had so many side effects 8 altogether one being peripheral neuropathy. I couldn't walk and still have jabbing pains and very red heels. I can only wear trainers with padded soles. I am 10 weeks post dose and it is better but by no means pain free. Hoping it will pass over time 

I was worried as not had the treatment planned but still had my six doses so fingers crossed. I had skin rash, blisters and red peeling skin like I had been burnt and such severe bone spasms one in my chest was so bad it involved calling an ambulance.

I think at 66 quality of life is as important as quantity so let's hope all goes well x

Thanks Janemb  I am rather hoping the lower dose weekly Paclitaxel is less brutal. I have a friend who had a hard time with Docetaxel

The problem with statistics is just that - they’re statistics!  Bear in mind you could be one of those third who don’t have problems. As you say, you can always stop if you experience any signs of neuropathy.  The way I looked at it was, how would I feel if I got a recurrence.

I had a similar umming and ahhing decision regarding Zolendronic acid treatments and eventually decided against them as the statistical benefit was less than 1%.  Have you looked at the NHS Predict Tool to see how much benefit the chemo would give you?  Again just statistics but might give you something to work with.

Loffie x

I have Loffie

According to NHS Predict Breast using my specific data: 3rd gen chemo (ie the Taxanes) saves 6 in a 100 people like me in the first 5 years. 12 in a 100 die of a recurrence in 5 years even with chemo. It’s TNBC so the graphs show the risk declines considerably after 5 years. So it would appear that 6% of people like me benefit, 12% have 6 months of their short remaining life messed up, the rest are over treated. Some have long term consequences. It’s Russian Roulette. No way of knowing which group you are in. The only test that I know works on TNBC to give you a better personalised indicator of recurrence is Mammaprint. It’s not offered on the Nhs presumably because it’s more cost effective to put chemo in you. I have asked whether a tissue sample can be retrieved and tested if I pay privately. But I suspect that’s something I should have requested prior to surgery for it to have any likelihood of being doable. 

You can limit the peripheral neuropathy by wearing ice gloves and socks - put on about 5 mins before infusion and replacing ice packs every hour. Also helps with nail issues from paclitaxel though nails also sun sensitive, so you need dark nail polish too. Does it have to be weekly paclitaxel or could you have 4 x paclitaxel every other week? Thinking of you as you make your choices.