paclitaxel peripheral neuropathy experiences

Hello,

I hope you don't feel too rough today from the actual chemo. I suppose the doctor thought he was being helpful alerting you to potential problems and in so doing, it has worried you. Let's be honest.....the doctor wasn't wrong. You can be left with complications for life if neuropathy develops which is why you must act if you feel anything isn't quite right. If you feet or hands develop a burning sensation, if you find the bed sheets hurt against your skin, if any skin starts to peel.....contact your health team immediately. I didn't know about the neuropathy. I had only just found the Macmillan site and I didn't want to make a fuss. The previous 3 chemo sessions had made me feel very unwell but each time it eventually passed so I assumed the same would happen. It didn't pass and unfortunately I had left it too late to be helped.  I'm not going into details because just like google it would frighten both yourself and other readers but it is sufficient to say I made the mistake of trying to struggle on and have been left with problems which are still reoccurring three years later.

However, I have chatted with many other post chemo patients. In radiotherapy, no one had the complications I had had. Online sometimes one or two had but usually like me, they hadn't told anyone when they began. Most people who answer your message will tell you they had nothing more than a twinge here and there. Others nothing at all and actually found this drug easier than the previous ones. If you are developing neuropathy you will know. It's so different to anything else. Just be ready to act on anything you don't feel is right.

I wish you well.I'm sure with all the info your doctor tried to give you no one will mind if you need to contact them but more importantly, don't worry. You will soon have completed all this unpleasant treatment.....you are half way now......and the future will be waiting for you!

Take care. Love Karen

When I had had 2 doses of paclitaxol my feet felt numb , I told th oncologist and he said it was too early and it was stress ........I looked it up on a good website and it said you could get neuropathy quickly on paclitaxol if you had had a taxol before ( I had docetaxol ) .....I went on with the whole course of paclitaxol because it was having some effect on the liver secondaries ........then ( ! ) Ifound that some centres suggest you sit with your feet in ice water during the infusion , and this helps prevent it ( bit like cold capping , but the other end of the body ??! ) 6 months later the numbness is resolving a bit , but there are a few people on the “ awake “ thread who have been left with some numbness ......I guess all chemo has side effects .....it is strong stuff !!   Best wishes and good luck .....x

Hi Sorry haven't posted on here for ages, all chemo and RT finished last year however, I do come on to have a 'nose' through some of the comments in case I can help!!

I had 3 x docetaxol (the dreaded 'T') the oncologist told me the same about the side effects and unfortunately, yes, I had (and still have ) the neuropathy.

To begin with it was very bad, it affected my fingers and toes and I used to get the most horrendous pain right  along my arm. It did start to ease after I finished treatment (which was last May) and I now have tingling and numbness most days in fingers and toes and sometimes some swelling.

I think, as other people have said, you either put up with it to kill the cancer cells or stop and see what happens. I'm afraid it was a no-brainer for me I wanted to be as sure as I could the cancer was gone and would put up with all the side effects if need be.

I am on Letrozole as well which has its own side effects. So I never feel completely 100% but am back at work and leading a normal life as the side effects are all manageble.

I hipe this helps and wishing you the best of luck with the rest of your treatment. xx

Hi Tessa

i had 12 paclitaxel.  Only the first was at full dose, then all the rest at 80%. I have a tiny bit of loss of sensation in my fingers, and sore feet, but nothing that would have stopped me from taking the treatment.  I also found paclitaxel much easier then EC, although it did build up. I was exhausted at the end and don’t think I could have taken any more. You can get through paclitaxel. It ticks by quite quickly because it takes over your life with being weekly. Good luck. X

Hi Taralou,

Thanks, and I hope your neuropathy symptoms continue to improve. xx

Hi Oks,

That sound very encouraging, thank you! xx

Hi Puzzler,

Thanks, my feet definitely feel wierd, hot, sore toe pads... and I've only had one lot of chemo. Surely not stress. hadné  heard about ice water, I'll ask. Hope your numbness continues to decrease.xx

Hi Lacomtekp,

I'm so sorry you still have problems 3 years later! Thank you for your advice, I will definitely not struggle on, I think that's what scares me about this chemo. With the AC, i could get through the nausea, mouth ulcers etc because I knew they would end, but this unknownness....

Thanks you for your kind words, reminding me that I am half way- yes, I am! I'd lost sight of that! xx

Hi Tessa

Thank u for your encouraging post I start 18  paclitaxel starting today!

Mandy x

Hi Cutie Mr!

I hope the first one went well for you. I think I was unusual to have such bad effects to my feet the first week. But guess what! I had my fifth dose yesterday, and doses 2, 3, and 4 were all fine for neuropathy,hypersensitivity, numbness etc. A few digestive things, headaches, flushes etc but nothing unmanageable at all. So I'm not nearly as scared of this drug as I first was. I think the main thing is to keep the doctor uptodate with any neuropathy symptoms.

For what it's worth, the only thing I actively do that could maybe help with side effects, and maybe it's only a coincidence, but I drink lot and lots and lots of water. I go to the toilet all day long,but I'm not at work so no big deal. I also try to go for a walk every day, slow and flat, my heart rate doesn't go up but i hope it still counts as exercise.

Good luck again!

Tessa 11