Radiation-induced peripheral neuropathy (RIPN)

Hello Chellesimo,

Well, 16 years is certainly a long time and 11 with incurable as long as my 11 after lung surgery (I'm here because my subsequent prostate cancer went incurable last year after 8 years, so I'm following in your footsteps so to speak).

I had gabapentin for peripheral neuropathy in hands and feet following adjuvant chemo after lung surgery in 2014. It had no adverse side effects for me but didn't work very well so was topped up with amitriptyline after a few months - this combination worked a little better but not much. After a while gabapentin was replaced with pregabalin which, with amitriptyline, worked much better. In all, the main side effect throughout was I could sleep for England if it was an Olympic sport.

I eventually stopped after a year or so and found things better by then - not completely cured but not intrusive enough to be life altering. I don't sleep much either now!

I do hope you can find a solution, the problem sounds awful.

Derek.

Hi chellesimo so sorry you are experiencing so much pain I am on gabapentin been on it about two years now which I have to take three times a day you start off on one a day then two a day which then goes up to three a day for me i have had no side effects from taking it and it does help with the pain but not completely out off pain but I wouldn't be without taking them as they really do help you will be monitored taking them as they are listed as a controlled drug my main use off taking them is as I have been diagnosed with intermittent claudication in my legs which is so painful in the calf of my legs numbness off feet loss off balance sometimes doesn't matter if I am stood on my feet or lying in bed the pain is still there but without gabapentin the pain would be even worse so I would take the offer of it being given to you huge hugs and love xxx

Hi Chelle

I can't offer any knowledge or experience of the drugs used for peripheral neuropathy, but I just wanted to drop in and give you a hug! So sorry you are having this pain to deal with, and hope the Gabapentin works for you.

xxxx Kate

Thank you Derek. I think the drowsiness is one of the things that worry’s me. Amitriptyline knocks me out, which is fine as I only take it at night, but he wants me to take the Gabapentin during the day as well. I know I won’t know unless I try. 

Flippen that is a similar dose to what I have been prescribed. I am sorry to hear about the pain in your legs, but glad the Gabapentin helps a little with that xx 

Thank you Puddock  the hug was gratefully received x 

Hi Chelle, I can't believe that the peripheral neuropathy has only just started after all this time.

I started feeling the effects of it, mildly at first, after my first chemo session. From then, it just progressed. They reduced the dose of chemo after the third session but it really didn't make much difference.

It is now two and a half years since my last chemo and the symptoms persist. I have never been offered any medication for it even although I complain about it. I am just told that it may improve but after all of this time, I don't think it is going to. There are days when I just want to stay in bed but I know I have to get up because not moving around makes it worse.

However, sometimes I have to stay still because my feet are too sore to walk on. I told my oncologist that it was like walking on Lego bricks. My hands are also affected as is my balance. The complication here is that I have arthritis in my right hip. I have been using a stick for many years now but mostly now use a rollator which helps me to balance better. I have even had to give up driving because of it and I loved driving but I just wouldn't trust myself in a car any more. I miss the freedom of driving but I am slowly learning to be a passenger.

I hope you find a solution to this.

Helen.

Hi Helen. I think with chemo you can get neuropathy during the treatment, but with radiotherapy it can be a late onset. Radiotherapy is just the gift that keeps on giving!

I am so sorry you have all these problems with neuropathy, the thought of walking on Lego made my toes curl up! Such a shame you have had to give up driving, that’s my worry that I will have to stop driving. X 

I swapped to an automatic when I found it too uncomfortable to change gear in a manual car. I too love driving, and my automatic car has been a godsend! May be worth considering, if you are still using a manual.

xxx Kate

Hi Chelle, I am so sorry to hear you too have neuropathic pain. They say it is one of the hardest things to treat.  This is because the drugs used make you sleepy and therefore you find it difficult to function.

I was dx as incurable right from my first oncology appointment Whitchurch was in 2013. The Trial Drug I went on gave me lots of side effects but saved my life and like you I consider myself lucky still to be here. I tried Amitriptyline but just couldn’t take it as I felt like a zombie. Then I tried Gabapentin followed by  Pregablalin but neither seemed to help and both gave me headaches, so I didn’t stay on them for long.