I have had my 4th chemo of Carboplatin and paclitaxel last week. During the 3 chemos, numbness, tingling in hands and feet was not too bad and seemed to get better by day 7/8, no sleep problems, able to walk some distance....this last one has been worse and I am now 15 days later still suffering from this neuropathy, I have mentioned it to my CNS nurse and she said they may have to reduce the dose for Taxol for my next chemo..
It has affected my sleep. Has anyone suffered from this side affect?
Is there any remedy for this. I went for a walk the one day...but found it made it worse and couldn't sleep all night.... so far it's worse on the soles of my feet and toes, my fingers are affected but not as bad as my feet.
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Dubai18
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Hi I have some neuropathy in my feet from my first line chemo, carbo/taxol/Avastin it’s never got any worse though, but nor has it got any better. My sleep has always been up and down depending on my stress levels, I think. It does seem to be the 3.00 wake up call most times though, I think that’s one of cancers traits, but who knows.
I’m now on 4th line treatment, it’s a very odd feeling though.Thankfully my fingers are only slightly effected but I still manage my cross stitch.
I can walk well but have to get up a bit gingerly but once moving it’s fine.
They say cold boots / gloves are quite good works on similar principle as the cold cap, you might want to research that ?
I believe neuropathy cannot be reversed, so do be careful, maybe a lower dose of your chemo might be needed but speak to your CNS and oncologist, they will give you the best advice.
Hi. When I had carbo/taxol for frontline chemo I was taken off taxol for the lat two doses as the neuropathy in my feetgot so bad. It made no difference to the outcome of the efficacy of the chemo. I still have neuropathy 13 years later albeit it has improved. I wish you well. Kathy xx
Thank you for reply, It is better than it was last week, but still troublesome at night. I am hoping it will get better. I have been told they will lower the dose of the Taxol at the next session.
Yes I have I could hardly hold things, undo jars etc. My feet were also affected and a sort of numbness went up to just above my calves. On my last chemo my oncologist did not include taxol. I was worried about this but she said carboplatin was doing the job and taxol was the icing on the cake. So its four weeks since my final treatment and it has improved. The cold makes it worse. A young friend who had bowel cancer also suffered. She is about two years since treatment and hers has greatly improved and cold weather again seems to upset things. I do wear bed socks as like you I cant sleep when its bad. If you are still having chemo I would tell your oncologist. Hope it eases up for you.
Hi, I had neuropathy in my hands and up to my elbows on first line carbo/taxol, dose was reduced for past 2 chemos. A year on I only have a slight intermittent pins and needles, it has improved over time.
Hi. I think some people recover entirely from neuropathy but most don’t. For me it would get temporarily worse during each cycle then go back to a baseline level. I don’t like it but am used to living with it—along with other “gifts” of cancer treatment.
Hi - I was ok with the first 4 sessions of carboplatin and paclitaxol. After session 5, I got some tingling in my fingers which lasted about a week. After session 6, the tingling in my fingers was much more uncomfortable and I also got it in my feet for the first time which made walking a bit difficult. It took about three weeks to subside and is now almost gone. I finished my chemotherapy 6 weeks ago and started Zejula a week last Thursday. Take care and best wishes - Yvonne x
I was on the same meds as yourself and it affected my big toes and soles of my feet. However as I am on chemo trials and my chemo has stopped I am also on a drug more commonly known as Avastin and therefore continue to get neuropathy. If it really effects your walking I know doses can be reduced. Luckily mine is cope able. Best of luck on the way forward
Thanks for your reply, yes mine is the same the mine is all the toes and the soles of my feet, sometimes it seems that there is so much heat coming out but when I touch my feet they are not that warm. I try to keep my socks on and at night. Xxx
Hi, me too. I am now 3 years nearly from Docetaxol had 6 doses but last two were reduced slightly. I lost 4 fingernails and I felt as if I had a screwed up newspaper under each foot and my toes were numb. Every night, even in the summer I have a hot water bottle (big one) it keeps warm til the morning. This helps enormously it is comforting and relieves the cold feeling. I found for the first year I had to wear shoes a size larger. This may help. I hope that you get relief. Mine is much better and I think that is partly acceptance and secondly just dealing with it keeping warm hands (gloves) and feet, shoes and hottie. Best of luck.
Hi Zssu. Cold hands and feet and a feeling of walking on screwed up paper is exactly how I have described it. It's nice to know someone else understands exactly what it's like. I don't think mine is ever going to go but it is worse in the winter. Still we cope a d I can still do my craft projects so things could be so much worse. Stay well and safe. Jackie
Hi Dubai, my daughter ordered frozen booties for me to wear during my front-line chemo. It seemed to do the trick for the first three chemo sessions. However, midway during session four, I found the cold unbearable, and I had to pull the booties off. That’s when my pinkie toes went weird. Not painful, but it feels as though my little toes have been bent outward. By chemo six, the sensation was in both of the two smallest toes on each foot. I have tried massaging the affected toes with Voltaren gel. It seems to help a bit. Hope your neuropathy improves when you finish chemo. Best wishes from Louisiana
Hi, I remember the neuropathy waking me in the middle of the night. Due to my poor immune system my feet really suffered. When I'd finished my 3rd line of chemo and before I started on the trial that I'm currently on I went to a chiropodist. I mentioned the neuropathy in the feet to her and she recommended Opsite spray. It's a cold moisture spray dressing. A quick spray on the feet in the night and it worked well for me. I still use it occasionally when the neuropathy strikes. I ordered it online. It's worth a try.Best wishes
Dubai, I know how you're feeling - it is quite scary. Mine was fairly mild but the thing that was the most annoying is that it affected my balance. Have you thought of having some physio? I got used to the loss of sensation in my finger tips although I tend to drop things a little bit more!
Dear Dubai18I finished chemo just over a year ago. I had neuropathy in several fingers and both feet. My fingers have recovered completely but I still have some neuropathy in my feet although it has improved over the months. I find it helps to keep my feet warm (cosy slippers!) and to wear supportive shoes as they make me feel safer when walking. The main problem is not always being sure exactly where my feet are and I worry about tripping over things ... it's always the back foot that trips as I can't see it! People who haven't experienced neuropathy don't understand this at all! Do stay hopeful as you almost certainly will improve, but it will take months not days. Try to work around the problem with practical solutions to help you manage daily life. I wish you all the best.
I've had neuropathy in my feet and hands for 7 years since having chemo. I was prescribed Amitriplyline and taken it for years. Another friend of mine that had breast cancer also takes it but for different reasons. I was also advised to keep my feet warm so often wear two pairs of socks and fingerless gloves.
You could try these things to see if they help but I don't think there is a cure.
Hi. You can research homeopathy medecine : granules of phosphorus and ampoules of "nerves" you can also look into glutamine an amino acid. I buy mine on amazon. A good phatmacist who is knowledgeable about this can help. I had your reaction and taming these cut leg pain out and controlled tingling Good luck
my wife treated with Taxol and Carbo as I understand what you taking now.
she suffered so much so we went to cancer expert to see how to stop this procedure which i supposed can kill my wife. His advice was to stop the Taxol and continue only with Carbo and Avastin and to split the dose of the Carbo to 1/3 and do the treatments every week instead of one every 3 weeks. this change save my wife's life. she continued to suffer from the neurophaty since then and
her doctors said that it takes time to get rid of part of it
but many things would not change , it harts the nervous systems .
I wish you all the best and try to take more experts recommendations.
Sorry you're experiencing Neuropathy. In 2013, during Taxol, I developed nerve damage in my legs, but was not symptomatic. However, from mid 2019 to May 2020, I had Taxol again & developed neuropathy despite using cold socks and gloves. I've been off taxol for a while, but still have neuropathy, less so now. I take gabapentin which seems to help. I'm no longer in terrible foot/leg pain at night. I hope this helps.
I suffered neuropathy especially with feet after same regime. Am nearly 4 years on and although neuropathy has not got better if does not impact on my life. I kept same dose throughout so maybe get the paclitaxol reduced and it will help with this side effect. This regime is very effective for OC so lots of luck for a good outcome.
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