Neuropathy Taxol

Hi Susie70

I had neuropathy from following chemo last year.  When I had my post treatment meeting with my oncologist I asked her about my neuropathy, she told me that it can take up to a year for it to get better and it doesn't always completely disappear, Make sure to tell your oncologist how bad it is as they can reduce your dose to reduce the changes of it getting any worse.

Since I finished chemo it has improved slowly but surely but it hasn't completely gone away.  Would you consider Reflexology?  I've been having Reflexology for the last two months and I've found it somewhat helpful.

Best of luck with the rest of your chemo.

Best wishes

Daisy53

Thank you for your kind reply.   I will definately tell the oncologist at next weeks meeting.  He did say on my initial treatment consultation they can reduce dose if I then have difficulty like doing up buttons.  I was not expecting neuropathy as I am only on Taxol but then again I heard  Taxol is notorious for neuropathy.

I am sorry you are still suffering from the neuropathy after chemo.  That must be hard.  Thank you for warning me and stay strong you have got this far and deserve a big fat well done. I will give reflexology a try for sure.  Thank you. 

Hi

I got neuropathy in the soles of my feet whilst having chemo. I reported it to the nurses on the chemo unit but said it wasn't too bad and I wasn't worried. She however reacted immediately saying they would need to monitor it closely as people have ended up in wheelchairs. I continued as my symptoms were not worrying at the time but 2years+ I have quite bad feet, toes are also swollen. This ongoing stuff is partly down to the neuropathy but also to general arthritis which in itself isn't helped by the aromatase inhibitor that I have (exemestane) so difficult to work out what is causing what but my mobility is impaired. I would urge caution and would suggest you speak to your oncologist or a chemo nurse before your next chemo session.  Good luck

xx 

Peripheral neuropathy is for me the big red flag side effect of chemo to watch out for as it can be permanent. I am also on Paclitaxel. I have had 7 infusions out of the 9 I should have had so far (missed 2 due to being hospitalised with an infection early on), and I have started to develop early stage peripheral neuropathy over the last 2 treatments. Tingling, and a bit of an odd feeling in some of my fingertips. Toes sore and itchy, bleeding under a couple of nails. I have an onco review on Monday ahead of my final 3 treatments. I am not prepared to continue with it unless the dose is reduced, and I will bail out of the final 2 treatments if it develops further on the reduced dose next week. For me, the marginal gains from having more Paclitaxel aren’t worth the risk of permanent disability. . 

Thank you all for your contributions.   Gosh I did not know the serious effects of neuropathy.   Yes it is very very depressing.  Just now I just spilled a bottle of water on my  beautifully washed  and fresh bed linen.  Because my hands are extremely weak , shakey , loss of dexterity.  Its like every thing I try to hold just drops out of my hand.   Thank you for warning me.  I will have a big heart to heart with my onco on Thurs and tell chemo unit too today.  Just on way to chemo,  though they do know because they gave the Pyridoxine B6.

I had a physio assessment last Thurs before my bloods and she confirmed neuropathy as loss of dexterity in test and sensory loss as she pricked me with needle and asked me to confirm which one was sharp prick and I got them muddled.

I am off work thank God.  Mentally this whole journey has been exhausting and draining. I am still only 11 weeks from a sudden diagnosis following routine health assessement at Bupa through work.  Of course I am grateful it was caught early at stage 2 Invasive but triple positive.  I do remain positive and strong but nothing takes away from the fact this is still emotionally and mentally the biggest ever trauma of your life and I have had a few if you read my profile.

We will get through this all.   The rainbow will shine.  Lets all keep going and thank you for the wonderful support from this forum and amazing cancer patients who inspire me every single day.

I read that it can often be permanent and it is one of the most worrying side effects for me. That along with heart and lung issues.

I am a violinist, so when I learned about neuropathy I got pretty depressed. I am supposed to have 12 weekly doses of Paclitaxel. 

I've only had 2 so far. 

I am also on Phesgo for a year, and worry that that can also add to the neuropathy. 

HER2 +++ stage 3, grade 3, so I do need everything to survive this.

Hi

I had Docetaxel (Taxotere) and did develop some peripheral neuropathy but only in my feet. I think the thing to do is to mention your worries to the chemo nurses and also to the doctor on the chemo ward and say if you do get it can you have an immediate review before it gets a hold? On my ward, the chemo nurse took it very seriously more so than myself. I basically thought at the time I could cope with this but although not massively impacted I think with insight I would have been more cautious. 

Good luck xx

Hi 

I had FEC chemo X3 then changed to X3  Docetaxal. I only tolerated one of these and had to revert back to FEC for last 2. 

The Docetaxal gave me so many bad side effects one of the worst (but not the worst) being neuropathy in my feet. I couldn't walk for two weeks more than a few paces. I finished chemo in April and my feet are still having spasms mainly at night the red hot jabbing pain will wake me heels worse than toes This is not all the time and is better than it was but I wonder if it will ever totally go. Goodness knows what it would have been like if I had had another 2. I also lost my big toenails and all the skin on my heels and big toes. 

It is strange to think chemo does so much good but causes so many problems along the way. Good luck with it all .Definitely ask consultant about reducing dose or changing it.xx

That's horrendous. So sorry to hear that happened to you. I really hope it improves and disappears. 

I haven't seen my consultant since the one off 15 min appointment in June, but I will definitely tell the registrar the second I get anything. 

After my 2nd Paclitaxel on Friday,  I have got a slight tinging in my fingers and thumbs. The hospital know I am terrified of neuropathy. I certainly don't want long term issues in my hands or feet. 

Thanks for your reply. 

I used ice gloves and mitts from amazon - you need a spare set of ice packs per hour of treatment and a large cooler with ice blocks to keep them frozen till you need to replace them during treatment. It limits, but doesn't entirely stop neuropathy.