Peripherial neuropathy

Oh yes Tracey, not so much after my main chemo but especially following my second Stem Cell Transplant.

Infect I could not walk due to the PN and muscle wastage so was in a wheelchair for a few months and had to have physiotherapy.

It took a few years for me to say I was out the other end - some folks have none... but it does normally clear up after a few months once the toxic effects on your nerves clears and just takes time to heal.

Do keep some regular activity going as this does help a lot, a sort off no pain no gain thing.

Peripheral Neuropathy

((hugs))

Thanks for responding.  Glad to know I am not on my own and I will keep plodding on.  COVID doesn't help nor does this rain as not able to get out but I do keep active at home and have outside space which some don't.

Yes for me. My feet, mostly the balls of my feet, mnot the heels, are numb and haven't got any better. Walking felt odd for a while but I was just getting used to it before lockdown. My fingers were also numb but they are now almost normal, just my finger tips sometimes feel numb. Good luck.

My fingertips still give me issues at times but it does wear off.

I still have a lot of numbness in my toes and the balls of my feet but I hope that will improve with time.  I'm always stubbing my toes at the moment.

I had 6 R-CHOP and have just completed my second high dose methotrexate.  I found things would wear off just before I was due for the next treatment.

Hi, thanks for the reply.  It helps knowing you are not on your own.  Looking at your history, I am a month behind you. 

I am on a clinical trial using Ibrutimab with Rixutimab which I started on the 30th January.  My lymphoma reduced slightly but not enough so started R-CHOP continuing with the Ibrutimab on the 20th March and finished on the 22 May.  I noticed the numbness and tingling to my hands first following my 2nd IR-CHOP and then gradually made it to my feet and then legs. 

I am 4 weeks post the last cycle and have been put on pregabalin to help with the neuropathy.  Hoping it starts to wear off as you say.  

I wear crocs or fitflops as they have a very comfy base which helps my feet.  

Many thanks

Hi Tracey

After chemo I have been left with neuropathy In fingers hands toes feet legs and nose/upper lip. I had endometrial/ovarian cancer. The treatment From first cycle caused problems. I couldn’t even walk Properly. It was stopped after the 3 rd lot so I could get well for radiotherapy. It’s a year on now and i have Been told for me it’s permanent now. I am on strong painkillers but have been searching for ideas or anything that can ease it more for me  Have you been given any advice That has helped? I feel this has taken more away from me than the cancer. 
I dont know How far on you are But hope yours gets better xx

Hi Brooksy,  you sound like you've got it bad. Mine started after my 2nd RCHOP. My consultant was aware and said we could reduce dose but I kept with it knowing 2 more to go but it got progressively worse. Was in clinic 10th June 3 weeks after 4th cycle and they put me on pregabalin which finally seems to be giving me some help. Last week was really bad though in my hands, feet and legs. It gets my upper lip occasionally.  This week I finally feel that the pain relief has started to kick in though I know I'll not be able to take pregabalin indefinitely.  My cancer is PTLD, post transplant lymphoproliferative disorder, with lymphoma in my right lung. I had a serious infection and pneumonia end of last year but I've kick that!!! I'm relatively still early in my journey. I have been told that some people will have peripheral neuropathy long term. They have explained that my pregabalin should begin to take pain away and in turn allow the nerves to repair. I work in an office so will not be able to completely fulfil my role as I struggle typing emails now lol. Keep in touch. If you find anything ground breaking please share and I'll do likewise xx

You have been through it!  I had surgery then Sepsis then chemo  The first dose was too strong I literally couldn’t walk the pains in my legs were diabolical and damage was done from that first one. they lowered the dose considerably but withdrew it due to the problems I was having after 3 cycles and in and out of hospital. I also was having probs with gallbladder stones. After radiotherapy I then had my gallbladder out then in again for stones left in bile duct. I’m doing ok now other than concern of bloating. I take gabapentin Tramadol ibuprofen paracetamol all full doses which calms It down but when it flares up nothing works. Worst thing though is I started a small business making cakes but it’s too painful and it takes me too long to do the decorating. the cakes I make are covered in handmade models flowers et cetera so I cannot go back to it. my other hobbies were painting drawing sketching wood burning and walking with the dogs so basically all my enjoyment of life has been taken away and I really wished I hadn’t had the chemo. But I’m thankful for treatment I’m just one of the unlucky ones as it’s taken away so much. The nerve pain though is torture isn’t it? I have not yet found anything to help for when pain relief is not enough. If I did I would broadcast it!!!

I really hope, in time, something works to take some of your pain away.  It's crap but if we come of out of this, we live to tell the tale.  Stay strong.  I too have dogs, one of mine is with my son, who along with him I had to send away due to COVID, he's a border collie and needs more than I can give, and I have a cocker spaniel and I still find it hard to walk him but at least I can get away with him playing in the garden if I don't take him out.  I have no energy this morning and my legs are aching so no walk for me too.  That is one of my favourite past times.  In the middle of nowhere with my furbabies.

Ahhh thank you. I hope you get relief from your pain later. My hubby put the fan on through the night and the breeze caught my feet so I woke up with tingling pains in my toes. It’s going off a bit now but means I only got a couple hours sleep. I’m planning to start walking again over the fields from next week. Going to try to build up what I can do. A bit scary as it’s open space! I prefer places that have things u can grab if I feel I’m going to fall. I am being referred to physio not sure it will help but will try anything! I hope as rules on shielding are relaxed that you get to be with your family more. This has hit some so hard and left them without support and i bet many are lonely. Can you imagine going through this without a dog in the home my two have kept me smiling. Have a good day xx