Hi Everybody,
Just want to reach out to anybody who has had Chemo for cancer and is experiencing or has experienced horrible freezing feet all through the day and worse at night and hot 'flushes' during the night making undisturbed sleep difficult.Also toes that feel all buckled up and numb and uncomfortable.
It would be helpful if I could discuss this with you.
Thankyou
Rita D.
I’ve been called worse!
Hi Rita
I don't like 4 am either and having broken sleep is tough.
Your feet sound really painful and I still find it odd how the sensations can change. I was doing some housework in my son's flat for him yesterday and by the time I finished I couldn't feel the bottom of my feet properly and it felt like cramps in my lower legs. I was walking like I was 10 years older. I do find sometimes that warm socks and even hot water bottles help a bit. Even when they feel like they are burning. Massaging can help- I tried vicks vapour rub- I did ask about it and was told it couldn't hurt. I also have tried pressure socks- ones without the toes and sometimes they can help.
I did try amitriptyline but I didn't like how it made me feel. There are other medications that you can try though for neuropathic pain. You could ask your doctor about gabapentin, pregabalin or duloxetine. These are ones that have been suggested for me. You could also ask about the vicks vapour rub or if there is any other topical creams that may help. You could also ask about increasing the dose of amitriptyline as I was told 10g was a low dose and they normally put you on a lower dose until your body gets used to it and then raise it.
I am sorry to hear about your vision but it is reassuring that they are checking you out. I had really sore eyes during chemo and for a short while after. I was prescribed some eye drops that did help a bit. I also found that my vision was affected for sometime. For the first time in my life I needed to use reading glasses. I went to the opticians for an eye test a few months after chemo finished and he said that this happens sometimes but now my vision has returned to pretty much what it was before. I do still have some reading glasses but do not need to rely on them like I did. At its worst I needed them to use my phone, read and to go on my lap top. Now I can do without most of the time.
I understand why you feel like you do and are feeling depressed. It is not easy when the treatments cause such effects and that they are there daily. I sometimes feel like I can't move on from the cancer as it's a reminder each day but then I am glad to be here and am just trying to make the best of things. I am sat on the sofa now with my feet up and both feet are feeling the prickly sensations. I will go out for a walk later as I know this will help. I am just trying to keep moving as I personally think that anything that can help increase blood flow to the nerves is going to help.
I am sure there must be other people who are affected. I remember my chemo consents appointment and them going through the side effects and saying that some side effects can start during chemo and then gradually resolve and then others seem to develop post chemo as late effects. I was told it can take a good 2 years to properly recover from chemo and not to expect too much to soon. Other than the neuropathy I am starting to feel a lot better than I did when I finished chemo this time last year. You are still at the early stages really and I did find that a lot of things did start to improve 3-6 months post chemo.
To start with I did feel I had to try really hard to find enjoyment again in life but it does come bit by bit as you get support for the side effects and begin to accept them and manage them. I tried to find one positive thing each day and that helped. I learnt to knit and that has helped my fingers. I discovered that I like taking photos and used this to motivate me to go for walks. I took photos of the little things in nature- they sort of show life goes on.
Hope this helps a bit. But here if there is anything else you need or want to ask.
Jane
Hi RitaD
You are welcome. Am glad it is helping.
- with the pressure socks- I wear them during the day if my feet are particularly painful. I never wear at night. I normally wear normal socks over them. You need to find the right size so they are giving enough pressure without being too painful or restricting the blood flow. I find softer shoes suit me most and -its like if I can feel the ground better, it feels safer. If I wear firmer leather shoes/low boots- my feet hurt more. I always wear shoes out side, never bare foot, in case I cut/injure myself and not notice.
-I haven't tried any alternative treatments yet. Did think about reflexology but to be honest am only just starting to get my tummy under control since the radiotherapy so have been focussing on that. I did enquire about having a physio assessment. There is a private clinic near me that do them and it isn't too expensive but I was told that it wouldn't really help so I left it. I also asked at my check up appointment about taking vit B12 as I had heard it was good for nerve damage but they said although it is unlikely to cause any damage, it wouldn't make a lot of difference. I just take a multi vitamin and mineral, and calcium now.
-I do wake sometimes with the prickly, crampy sort of spasmy pain. Sometimes I get up and walk around the bedroom to help ease it.
-with the amitriptyline- You need to check with your Dr before increasing the dosage as it does have side effects and can interact with any other medication you are on. It may be that they advise you to take at a different time of day or to up the dose. It may be that it is affecting your vision but Moorfields will be able to tell you. My vision after the chemo was sort of blurry when I tried to read etc. I have not had double vision.
-I have heard that some chemo can affect eyes but it depends on the doses and type of chemo. I was told that most problems to resolve but to leave having my eyes tested for a while to allow them to settle/adjust. Mine were ok again when I had the eye test and retina scan.
-With me being 1 year after chemo and you being 4 months- most of my initial side effects have resolved. It has taken a long time for my bloods to return to normal. With the neuropathy, the damage started from my first infusion, progressed with each cycle and then remained after chemo. So the damage was done by the chemo at the time. My body is still recovering from the impact of the treatments but the actual neuropathy was caused a year ago. My neuropathy was the same when I was 4 months post chemo as it is now, in my opinion. I have heard of sometimes chemo can cause Late effects that develop after chemo has finished but from my experience these effects seem to happen during the treatment.
- I have heard of peripheral neuropathy being progressive from stages 1-4 but from my understanding chemo induced neuropathy is different. I have never been given a stage for it. I discuss it at my check ups but its sort of a case of accepting it is there, coping with it and trying different pain relief for it. I was told to discuss the medication with my GP, which I did. At my check up they just said it's a permanent side effect from the paclitaxel and that any reduction in dose etc that they gave me was just to try to prevent it getting worse.
- I know what you mean about not wanting to feel disabled. I do talk to people about side effects but don't think of myself as disabled- I do think of myself as recovering from cancer if that makes sense. I am so much better now than I was even 6 months ago and that alone makes me want to make the best of things. When I was at your stage (4 months) post treatment I did feel quite flat. I thought I would feel over the moon that the treatments were all out of the way but I still felt like I had lost my spark. When I was told it was permanent it was almost helped as I knew I had to accept it and that felt better than the wondering.
I hope you appointment goes well this pm
Jane
