Chemotherapy Neuropathy

Hi Jan

I developed neuropathy during my treatment for endometrial cancer in 2022. 

It started with tingling in my fingers and toes and despite alterations in doses it progressed with each cycle. 

I am now 2 years post treatment and still have it. It is mainly my lower legs, hands and lower arms. 

Some people find that it does gradually improve, for a few it becomes long term. 

My chemo was carboplatin and paclitaxel and it was the paclitaxel that is known for it. I was told it was a potential side effect before I had treatment but to be honest they tell you so many different possible side effects, it is not something I thought a lot about pre chemo.

I have just finished 2 years of check ups every 3 months. Each time they asked me how the neuropathy was but the checks were more about looking for recurrence. For me, although my team were very supportive- it was cancer that was the focus, rather than side effects. 

I did consult my GP and was prescribed amitriptyline for pain relief. It is worth a try as normal pain killers do not tend to work for neuropathic pain. I did not take the medication for long as it can only help with pain but does not help with the numbness, nerve sensations etc. There are other medications that can be tried but I was trying to move away from that. 

What did help me was having a physiotherapy assessment. Although a referral could be arranged via GP, it would take time so I paid privately for one. It was well worth it. The assessment cost £50 and included lots of recommendations and an exercise plan. Although she was clear it would not cure it, I do believe just having an appointment with someone that listened and gave me ideas to help was worth it. She assessed my walking etc and said there was a weakness on one side and the purpose of the exercises is to build up the muscles in the area and increase blood flow to the damaged nerves. In that way the areas affected become stronger and more stable. I have started to notice a difference. 

Hope this helps

Jane

My oncologist recommended taking Vit B12 also B6 and B1

I hope you can get some improvement xx

Hello Jane,

Thank you for reply. This is really interesting. I have had a few responses so far that tell a similar story. And maybe this is a great way of finding shared experiences.

It was indeed paclitaxel that started mine and my pain was so severe that I had couldn't complete the course. I have had phisio (lots of it). But any over working of the area makes things worse due to the scar tissue. So I now just do gentle stretches. I have acupuncture and this has been great in calming my nervous system down. I am on a low dose of pregabalin which helps with the sweats from my medication and amitriptyline but I find it heavy. I have also tried Lidocaine patches, which worked initially. I know people try these on their feet - may help you?

I also have Quetnza chilli patches on my feet (pain clinic), you may want to look into that. I have a portable tens machine that helps disrupt the pain signals and reduces the burning sensation. Failing that nothing works for me, unfortunately. I also tried medical cannabis. Pain management techniques, meditation etc help but it has to be constant and talking therapy has helped. 

So thats why I'm trying to reach out to others, as I believe that people with similar shared experiences validate your own. And any information shared can be helpful in recovery and self management. 

I do find post chemotherapy care seriously lacking. So it can feel very isolating.

I hope this may inform you a little and maybe there is a nugget in there that you find helpful. Your response certainly makes me feel not so alone.

Jan

Thank you for your reply

I do take xx

My lower legs at times feel like I am wearing too tight compression socks. Almost like a glove sensation. The pain and sensations vary- sometimes its sharp, shooting pain, sometimes burning, tingling, sometimes its more crampy. The bottom of my feet actually look red most of the time. The numbness and pins and needles sensations can come on randomly and I have fallen and stumbled many times. 

With me hands its similar sensations. They are also sensitive with temperature changes. Lately they feel crampy/spasmy. Sometimes I find it hard to open jars etc and my grip can be affected. If I am using my lap top or playing piano I need to take regular breaks as they will start getting really painful and spasm. 

The physio has given me exercises to squeeze little spiky balls and it eases it at the time, rather than prevents it. Massaging can help a little. Since doing physio I can feel a slight change in the numbness in my finger tips. I do still drop things sometimes. 

One other thing I have noticed is that my spatial awareness doesn't seem quite right. For example if I am in the shower and close my eyes to rinse my hair- then I tend to feel wobbly/lose balance. 

I have tried patches, tens like machine, vitamins etc. The only thing helping is the physio as its helping with stability when moving around. I also find I need to move (even if I am pushing through pain) because if I don't my symptoms get worse. So if I go for a walk- it might feel painful, achy at the time but it is better physically and mentally if I do. 

I have recently done the HOPE course through Macmillan and that was good in that it helps process things when treatment ends. There were others on there who also had been left with some neuropathy. 

Jane

Thank you Jane. I walk too. Acupuncture, tens machine and pregabalin all work a little. It is so debilitating.

Dear Jan my reply is rather late but l am new to the forum. I too am suffering from cronic neuropathy to the point where l feel it is only a matter of time - maybe months that l lose my mobility. Just writing that makes me want to cry as that would be my worse nightmare. I was diagnosed with bone cancer over 10 years ago and thankfully with immumatherapy treatment this has remained stable and ironically causes no pain !! It is the consequence of the chemo that is causing so much pain and stress. I totally agree with all you say. I was never told about the side effects and have tried all the tablets, patches and physio but it is getting worse and no one can tell me why and how if possible l can stop it. There is no one to give me any answers. The Marsden are brilliant but are really only interested in my cancer. This is effecting my relationship with my husband as for the last two years l am short tempted, frustated with myself and never laugh anymore. Living with constant pain and the worry of losing my mobility is consuming my life. Feel very alone and depressed. Have a little dog that l cannot walk which upsets me so much. Know l should be grateful that my cancer is stable but it is so hard living with this condition.  So sorry to go on but reading your post at least makes me realise that l am not the only one suffering

• Please take care 

So many similar stories here. I had 12 weeks of Paclitaxel in 2022 for my primary cancer (TNBC), and then a similar amount of NAB-Paclitaxel in 2023 alongside Pembrolizumab when my cancer became metastatic. I had a serious immunotherapy related adverse event which meant I had to stop treatment and needed high dose steroids for 9 months. The cancer is in remission but I have neuropathy, joint pain and muscle weakness from the various treatments. My toes are uncomfortable, I feel like I am wearing a compression sock on the left side, plus I also have issues into my buttock. I think these are a mix of neuropathy from the chemo and inflammation in my spine from the IRAE, pressing on my sciatic nerve. The joint pain and muscle weakness come from the steroid use. I also have tingling fingers and poor grip.

I knew about all these possible side effects in advance, but have needed to address the mets with the immunotherapy (which required chemo alongside it) and then address the kidney and lung damage from the IRAE with the steroids. Ibuprofen helps a bit and maintaining exercise despite the discomfort also helps. If I do too much I am laid up and can barely walk. I am gradually getting worse and do worry I will completely lose mobility. Oncology not overly focused on it and my GP hasn’t been able to suggest much to help. 

• Glad to hear your cancer is in remission but so sorry that you are suffering from the side effects of the various treatments. You have really been through a tough time.
• No on told me at the time about any side effects from the taxol and if l had know then maybe l could have at least tried to help the nerves repair. It is of course too late now as damage done. I cant believe that l am living with cancer of the spine and pelvis and have had tumours in the brain,  without any real pain, thank goodness. But the actual treatment is now crippling me but physically and mentally. This seems very common and like you oncology although very sympathetic not really focused and all my GP can do is refer me for physio. I so wish there was a group or some support as l do find at least talking about it does make me feel less alone and afraid.
• I wish you well. 

Thanks Lallylo 

Here are some of the things that have helped me. I have had some physiotherapy. Nerve glide techniques help with my arms but not my legs. A massage ball does help my feet. I have a bolster sized body pillow that I use to try to help my sleep. I take a couple of slow release ibuprofen in the morning, and put ibuprofen gel on various areas before I go to bed. I have some walking poles that help tremendously. I have a drawer full of kitchen tools to help with the hands. Other than that it’s trying to keep moving and trying to accept that it’s a price I have paid for staying alive.