Paclitaxel and neuropathy

Hi RustyB I had paclitaxel after EC and didn't get neuropathy, so it's not a given that you will get it. I didn't do anything to help stop it either.

I wore flight socks and used cold mitts and boots for 9 x weekly Paclitaxel. I had slight tingling in my feet in the last few cycles but it corrected it self before the next treatment.
I haven't suffered from neuropathy.

My thoughts were that it was worth trying.

I looked at hiring a gloves and socks cooling unit from an outside company but it became very involved and my chemo unit wasn't keen. So I cobbled together a collection of stuff that worked for me.

I'm happy to give a list of what I bought or, if you live in NW London happy to give you the equipment I used.

Good luck with the next part of your treatment 

dx

Thanks for sharing your experience. My nurse suggested items that are available online, cold mitts and socks, but said there’s limited evidence of whether they actually work. It’s difficult to know what to do for best, we are told that everyone reacts differently and that not everyone is affected, so I suppose it’s a case of trying to reduce your risk. 

Hi Rusty I had this chemo 13 years ago.  Never heard of cold mitts and boots at that time.  I suffer really badly with neuropathy in my feet sometimes it affects my mobility.  Hopefully the boots and mitts work for you.  good luck with finishing your treatment.

I did a lot of research before deciding to do the hands and feet cooling but eventually realised I would be more likely to regret NOT doing it , than doing it.

But it's a personal choice and out can work out expensive.

The cold mitts and socks don't stay cold for long so you might need 3 sets.
I bought a Suzzipad set and I found them fiddly to put on when hooked up to the infusion.

I felt more comfortable with using Hilph Foot Ice Pack Slippers (from Amazon) with compression socks - and Koolpak Hot and cold Gel Packs for my hands.

dx

I had to have treatment with Paclitaxel twice in 2 years. 12 weeks the first time.  A slightly lower dose of NAB-Paclitaxel 3 weeks on 1 week off for 4 cycles the second time. I tried using cold mitts and boots the first time around but found it too impractical. Unable to use my hands during a long infusion and needing to change each time I needed to go to the toilet. I had some tingling in my hands and feet during the last few weeks of the first block, so had a lower dose for the last 3 infusions. The problem got a bit worse over the first month or so after stopping but then stabilised to a point where it was barely noticeable.

Second time around, it didn’t seem to get any worse during treatment but again escalated after I stopped. I knew it could ‘coast’ after treatment stopped but I hadn’t foreseen that the escalation would continue over several months this second time round. It did stabilise about 4/months after treatment stopped but it has not got better.  I have been left with a permanent feeling of woolliness in my finger ends and I sometimes find it hard to pick up small things or hold things. My feet buzz at me some of the time, particularly when I go to bed, and I also get cramps. The toes are very sensitive to touch and also often feel cold.  Overall it’s manageable.  It doesn’t affect movement, just the sensations coming back are not what they were. It’s not painful as such, just weird. 

I used these Ice pack slippers. You can just slip your feet in and out of fairly easily.(I also wore compression socks with them)
I also took a pair of ordinary slip on slippers for when I needed to visit the toilet as you can't walk in the Iced slippers as they will break.

I found the boots really awkward too. The mitts didn't bother me so much as I didn't care about using a phone or reading a book.

I'm sorry you have developed neuropathy.

dx

The Taxotere gave me neuropathy. Several nerves in my feet were permanently destroyed. There are a number of associated problems but I take medication and see the neurologist every six months to control them.

The difference between my treatment and most of the plans previously mentioned is the quantity of drug that was given. My treatment in 2016 was 3 x the Taxotere. Nowadays very few oncologists give the full dose every three weeks, three times.....most go for either 9 x weekly or 4 x 80%. The reason was the realisation,  that despite the success rate of the drug against the cancer, patients could have a severe reaction which caused permanent damage. Symptoms of the reaction include burning skin under feet which peels, numbness, leg pain, numb fingers, skin peeling on hands. If you experience any of these, tell someone. I made the mistake of assuming this was normal and it was too late when I did see the oncologist. The damage was done.

However, with the modern doses I rarely read of anyone who has permanent severe neuropathy so my advice is don't worry. Just be aware of things that could happen and act on them if you experience them. Leelaloo had her Taxotere in 2013. I'm sure she will agree with me that with the tweaks in the treatment, you are much less likely to have a reaction. 

For me the treatment has worked well against the cancer. Ten years on I am still clear of cancer. I wish you all a successful recovery too.

Karen

Did they work please? How many pairs and how long was your treatment? 

Hello Karen

thank you for taking the time to reply and share your experience. I’m sorry to read that you were permanently affected by the treatment. It must be difficult to know that current processes may have given you a different outcome. 

I am so glad to hear that you have been cancer free since finishing, I hope to be there too one day. 

kindest regards 

Sue