Radiation-induced peripheral neuropathy (RIPN)

Hi Chelle, I don’t know what happened there, I didn’t press Reply.

Anyway, I also have osteoarthritis which has been accelerated by the cancer drug. I started getting electric shocks which were severe. Then one day my legs gave way and I fell. I had a spinal decompression as three discs in my spine were out of place. To hold the spine together they had to put in a plate. Now the NP has spread all over. I was in agony and haven’t slept much in the last 5 years or so. My GP had no answers. Then another side effect popped up, cirrhosis of the liver and because of that I couldn’t even take any anti inflammatory drugs for OA. The pain got intolerable so My oncologist said I should be referred to the Pain Team ( I didn’t know there was one). Before I could take anything, I had to be weaned off the drugs I was on. I now take MST slow release twice a day plus morphine sulphate quick release up to 4 times a day plus paracetamol. This week, under the care of the Pain Team, I’ve started Gabapentin again to see what happens. 1 At night for the first week, one morning and night the second week and three a day the third week then after two weeks on 3 they will reassess! The funny thing is this time around it doesn’t make me sleepy at all! If you have got to the stage I got to, you have to give it a go! Maybe after a while you could take a lower dose of Amitriptyline then you won’t be as drowsy! I hope it works for you.

I too have an automatic car or I wouldn’t be able to drive, it is definitely a Godsend! Please let me know how you get on. Have you seen someone from the Pain Team, they are great?

Sorry for the long post. As you see I don’t sleep but I’m hoping that will change!

Thank you Annette, it’s interesting that you are not getting the side effects the 2nd time around! My worry is the headaches you mentioned, as you know I suffer terribly with migraines.

I’ve not seen the pain team. It’s like everything with cancer care I’ve found, you really have to fight for any sort of “after care”. For all of my ailments that I suffer from, all of which are caused by my cancer meds and cancer treatment, I seem to get a shrug of the shoulders from the medical team and a “it’s a side effect “ comment. In other words put up with it, nothing we can do. The hormone treatment is the worst! The amount of side effects I get from that, which “normal “ women get help with going through the menopause, I just get told it’s a side effect. It’s so frustrating!! Sorry for the rant, not a good day today, hopefully tomorrow is better.

I hope the Gabapentin helps you this time and you start to get some sleep! Xx 

Hi Chelle, You are right about having to fight for what we need. I am lucky my Consultants ( of which I have 5 now thanks to side effects) are really caring. My Dermatologist wrote to the lymphoedema Clinic to tell them to see me again as they should be monitoring how bad it is getting and try to help! It was the Liver Consultant who referred me to the Pain Team as because the drug caused cirrhosis of the liver, there was a lot of pain drugs I couldn’t take. When I had back and leg pain, it was my oncologist a few years ago and not my GP who arranged for me to see a spine specialist. My GP told me to take more pain killers but didn’t order an X-ray. It turned out I had vertebrae out of place and needed a spinal decompression. I had been suffering for almost two years and the Spinal Consultant said he couldn’t believe I was still on my feet, even with elbow crutches. I told him everyone puts things down to cancer side effects but it just shows it isn’t always.

Do you have anyone who is a medical professional, like your specialist nurse or anyone that you could speak to and let them know just how bad you are feeling at the moment.

Here in Scotland they now have an ICJ Team. This means Improving the Cancer Journey and it is for anyone who has or has had cancer in the past to let them know if they need help with anything. They have a coffee morning in the library every second Wednesday run by McMillan nurses, who are wonderful.

I wonder do you have a similar team you could contact? I do hope so! Never apologise for ranting, we all need it sometimes. I hope this is a better day!

Hi anndanv yes I could contact my MacMillan nurse, but she will only put me in contact with my oncologist who is lovely, and has been a great support to me over the years, but I mentioned this neuropathy to her 2 years ago when it first started, and here I am now just getting pain relief from my GP! I sometimes just get the feeling of, you are alive so what does it matter? Get on with it sort of approach. I don’t know maybe I’m being over sensitive. 

I am away in the new forest next week dog sitting my daughters cocker spaniel who is only 2 weeks older than our pup so that will be interesting, so won’t start the Gabapentin until I am back home. If it does make me drowsy I Don’t want to fall asleep and wake up to the house being wrecked by 2 playful puppies!! 

Hi Chelle, I'm sorry for the confusion over the different types of neuropathy that we both have. I just totally ignored the Radiation word and waded in, silly me.

I was just so glad to see that someone else understood what it was like. Your symptoms sound even worse than mine and I feel the same as you about the attitude of the doctor, oncologists etc. I mention it every time I speak to them but they never seem overly concerned. I only take Paracetamol for it. I can't take Ibuprofen as chemo also left me with a blood clot. I also don't want anything that makes me too sleepy so I just put up with it.

Just before I was diagnosed, we ordered a new car, a manual one. By the time we got it, I was already feeling the symptoms of the neuropathy. The following year I turned 70 and because of the way I was feeling, didn't renew my licence. Almost two years later the symptoms are no better and even if we had an automatic, I still wouldn't be able to drive it as my hands can stiffen at any time. John sometimes has to cut my dinner up for me.

Anyway, enough of my moaning. You sound as if you have your hands full next week with the two puppies. However, I'm sure with your experience of dogs that you will manage. I have never been to the New Forest but I will be in Portsmouth on Wednesday to have an overnight there before catching the ferry the next day to France. I've never been to Portsmouth before either.

Have a lovely time. I'm sure there are plenty of good walks around there.

Helen 

Helen if you come to Portsmouth again let me know, I’m just outside Portsmouth, shame I’m in the forest on Wednesday when you are here x 

Hi Chelle, I didn't know you lived in that area. So you can pop over to France any time? You are so lucky. It is over 400 miles from here in Lanarkshire just to get to Portsmouth. That is the reason we are stopping over half way. When we were younger we would have done that journey in one go.

We used to always leave from Plymouth as it was so much easier for us in regards to motorways. Although one year we left and returned to Poole.

It's always nice to see a new place.

Helen 

We have all the cruise ships leaving from here, which is why I love cruising so much, it’s so easy, leave home and on board and having a cocktail in half an hour! Enjoy France x