Neuropathy- help

Hi there, so sorry to hear you're struggling like this. It's a good idea to talk with your medical team about the impact of reducing your dose, but I have heard of this happening to others as well.  You might also want to give the lovely folks here at Macmillan a call. They're here for you to chat things through, provide a listening ear and any advice you might need. You can call them on 0800 808 0000. Best wishes 

Hi Sparkle498uk

I had the same treatment- paclitaxel and carboplatin but for endometrial cancer.

I also have the neuropathy. For me it can mean different sensations. numbness, pain.

Mine started with the first chemo and persisted. I did have dose reductions of the paclitaxel. I was told by my consultant that the carboplatin is like the cake- and it does the hard work and the paclitaxel is like the icing on the cake. It is important but reducing the dose should not have a major impact on the effectiveness of the treatment. 

It is unfortunately common with paclitaxel. Some people find it does improve once chemo is finished, for others it can linger. If it does linger there are medications that can help once chemo is over. I also had a physiotherapy assessment and was given exercises to help. Hot and cold packs help me. Also keeping moving helps. 

Best thing to do is to talk to your consultant/CNS about how it is affecting you so it can be monitored. 

I hope that it does improve in time for you.

Jane

Thank you, I hope you didn’t suffer too much either. I have one session left and really hoping I can muddle through and it doesn’t get worse. 

Hello. Sorry to hear you're having a tough time. I had the same for my last doses of Paclitaxel and was anxious about going on to EC. My doctor told me that EC doesn't affect nerves in the same way, whereas Paclitaxel is a known nerve irritant. I know it's different for everyone, but for me, the neuropathy was only whilst on Paclitaxel, then with EC I had no issues with it. It went away within a week of finishing Paclitaxel, which was wonderful, as I also had the 'want to chop my hands off' experience!

As a heads up though - eight weeks after finishing EC, the dreaded pins and needles came back. Mine was always at night time when I was on Paclitaxel, and this was at night time too. My doctor said it could be late chemo side effects. I had it for a few weeks but it seems to have subsided now, which is a relief, as they couldn't access my veins to take bloods to check out whether it was that or something else.

Good luck with the next stage of treatment, and for getting through the Paclitaxel xx

Thanks so much, that does provide some reassurance that it should subside through EC. 

How did you find EC? 

I came on with neuropathy after radiotherapy and while on letrozole, hadn’t really noticed the increased pins and needles although thinking back they were happening, just hadn’t made the connection! Back in work, stood up in my boss’s office, didn’t realise had a dead foot, so I keeled straight over and broke it. Surgeon later told me I had neuropathy linked to nerve damage from the surgery. Didn’t offer any meds or solutions but I find I need to be careful to not do my shoes up too tight and when it comes on, awareness and keep moving hands, feet. Think mine is probably mild but it does impact confidence sometimes out and about, especially on a challenging hike or something like that 

Sorry for the delay - I just saw your reply. 

I found EC tough, but more so because I kept getting infections (RSV, chest infection, stomach bug) despite isolating - it was winter and I suspect I picked them up in the hospital when I was waiting for clinic appointments. EC itself was definitely tougher than Paclitaxel, but my oncology nurse said Paclitaxel is harder if you have them the other way round - it's just that your body has been through a lot by the time you're on to the second drug.

In terms of side effects, I think it's different for everyone, but I'd say definitely reach out for support with them - I had some issues with mouth sores and ulcers and was given mouth wash which really helped. 

I ended up dropping to fortnightly doses as I was so back to normal by week three that I didn't want to stretch it out over such a long time. Every two weeks meant less time to feel better but also meant it was over sooner. And when it was tough - just the first bit of the first week, and that was mostly insomnia from the steroids, I just kept reminding myself that it wasn't forever and as the days passed it did get better.

One thing I found helpful was being told about its colour in advance - the E part is administered by a nurse through a syringe into the PICC line where I live, though I've heard they use a drip elsewhere. And it is bright red. I don't know why, but I found that quite disturbing, so was glad to know to expect it. Apparently they dye it so the nurses know they're handling a toxic substance.

I think, like all the treatments (I've had surgery and am just finishing radiotherapy too) they're all consuming when you're in them, but then you move past them. That last dose is SO emotional (happy it was over but sad the safety net of treatment was ending) and within weeks chemo felt like a distant memory. 

Good luck with it. You'll be through it in no time xx

Thank you so much for your honest response. 

I know the red colour is alarming isn’t it, I’ve seen it administered a few times around the ward and the colour makes it scary. 

I found this a really positive post having just started EC chemo (and felt horrific for the 1st 6 days). Thank you x

It’s very common to have a dose reduction and hopefully your team will be able to reassure you that it won’t significantly change the effectiveness. In my experience PN tends to get a bit worse in the weeks after you stop Paclitaxel. I have had paclitaxel twice. The first time my PN eventually subsided. The second time it didn’t and I still have it today in both hands and feet. Oddly it’s worse some days than others. EC was horrible in all kinds of ways but didn’t lead to PN for me.