Hello, I'm new on here I've just finished 6months of chemo and the peripheral neuropathy seems to be getting worse, moving from fingers to palms and feet to calves... any thoughts?..
Hi Worm and welcome to the board. Yes mine got worse after stopping and I wish I’d spoken up earlier about my feet tingling rather than trying to prove the oncologist wrong when she said I wouldn’t finish all 9 sessions! Does it improve? Yes and no. My fingers were a little bit tingly and they’re ok now. My feet feel like they’re permanently sunburnt - they feel hot and swollen and my skin feels like it’s tight all the time. The front of my legs also feel a bit numb - like when pins and needles are just wearing off. If I’m honest this hasn’t really improved since I stopped in 2017 and I’ve learnt to live with it and sleep with my feet stuck out of the covers. Things can improve over time and hopefully it will for you too as there does not really seem to be anything to improve the condition - I found a reflexology session to help for a couple of days but nothing long term.
Hi Worm, yes also same for me, decided to make last week my last big chemo due to problems with my hands and feet which was agreed by nurses to stop, I had 8 cycles, constant numbness, difficult to walk and just praying will get better! I’m waiting to see what my oncologist comes up with next line to use next mth, I will continue on 5FU weekly till see him. Hope you get some positive results too,
I finished chemotherapy in March 2019. While I was taking it I suffered from hand and foot syndrome (palmar plantar). My hands and feet were very sore and peeled and cracked. I had my dose reduced and my symptoms improved. Afterwards I still had very sore feet as Karen described. I went back to work but as I'm on my feet all day I had to reduce my hours. A chance conversation with a nurse at my gp surgery resulted in a telephone appointment with another nurse who prescribed Gabapentin. This has improved my symptoms no end. It hasn't gone away but it's so much more bearable than it was.
I think that the Oxyplatin infusion can cause Peripheral Neuropathy - & Capecitabine Tabs can cause Palmar Plantar - which are very different conditions...but both cause problems with the hands & feet. I refused the infusions - because of the former, & just had the Tabs. for 6 mth cycles. I developed bad Palmar Plantar (mainly in my hands,) in the 5th. month - which resulted in very bad. cracked & peeling skin (despite constantly applying conditioning creams.) My Oncologist stopped my Chemo then - & the condition immediately went.
I had Capecitabine, which caused my palmar plantar. It was afterwards that I developed the peripheral neuropathy. As you said they are very different. One just seemed to morph into the other. My feet feel like I'm walking on cotton wool, even when I'm just in bed.
As a practising artist, I was terrified about losing the ability to not be able to hold a paintbrush again...due to possible numbness in hands. I should have started on 6mths. of Oxyplatin & Capecitabine in April '20....when I developed two small Mets. in Lungs (following Bowel cancer in May '19.)
However, when it came to my first Infusion - I had a total meltdown at the hospital & refused it - & asked for the Tabs. only. My Oncologist tried her best, but I was adamant that I did not want it & so, she reluctantly agreed. My thoughts at that time were 'Quality of life - rather than quantity of years.'
& So, I had 5 mths. of the Tabs. only - which fortunately shrunk the 2 tiny tumours in my lung - which enabled me to have a Lung Ablation in Oct '20.
I have just had my recent 6 mths. scan - which currently shows that I am at the moment clear of cancer. For me - it was the right decision...& I am still able to paint.
That's great news that you are free of cancer. I am too at the moment. It was March 2020 when I finished my chemo, not 2019, as I previously said. How lucky I feel to have got all my treatment done just before lockdown. I feel for those who have had to go through their treatment and surgery alone, with no visitors in hospital or anyone to accompany them to appointments etc. Worse still, had treatment delayed through covid
I had 3 mths capox at the end of 2019.I had the blood test first which showed that I was a candidate for hand and foot syndrome.luckily I didnt have foot problems.did have really painful tingling in hands and cracked skin and nails.that cleared up once I finished the chemo,the only lasting effect has been inability sometimes to be able to swipe across screens when typing etc as they dont seem to like my finger tips.dont know if they are just too dry?
Hi Kath - I didn't know there was a test - wasn't offered it at time. Likewise, no lasting effects from Palmar Plantar - however, it does cause you to lose your fingerprints...I still can't use my phone print identification. What with mask wearing & no fingerprints - a good opportunity to rob a bank perhaps?!
