Hi Everyone
I’ve just started another chemo regime - 5FU over 72 hours and Navelbine for liver secondaries. Had Taxotere til June and had same sleep probs then. so I dread the thought of going without sleep again. Apart from the other effects I’m having real difficulty sleeping. Only getting about 3 hours a night. Seems liked I’ve been ‘switched on’ and become very mind active - not worrying or stressing (thankfully) but planning things, etc etc. I can’t seem to nap in the day either. Finding it very wearing and wondered if anyone had any natural remedies or other suggestions that work for you. In desperation I tried just one dose of Piriton syrup last night (I have had this previously with the Taxotare dose so presumed I’d be OK) but then I’ve just read you shouldn’t take this with liver disease?? (Did sleep for about 5 hours though in total).
Obviously, when I see Onc on Weds next I’ll discuss it with him but I don’t want to take any strong sleeping pills cus of needing to drink plenty and pass lots of water to dispel the chemo etc. and don’t want to be ‘zonked out’!!
Grateful for any of your experiences/advice.
Luv Carol x
Hi Carol,
I can only sympathise.
I was on steroids for the last three weeks and was going demented 2/6 then4 hours a day - none over night at atall.
I had to get docs to prescribe a sleeping tablet it got so bad. Should only be on tham for a couple of days then done (absolute last resort due to length of time on steroids before treatment)
How many steroids are you taking eachday? Over how many days? Do you get a break between chemos?
I have liver mets andI got piriton throughout my chemo I nodded off for about anhour each time.
Do you have a breast care nurse you could talk to?
I am now on a reducing doses of steroids and the sleep will come back.
As I was on it for so long they had just built up to much for meto switch off.
Try and take them early as posible through the day and not haave any beyond say 1-2pm
Hope that helps
Love Kate
Hi Carol
I do sympathize with the steroids/sleep problem.
I’ve just finished a course of Taxotere and was given Dexamethasone - mine was a slow release tablet that I took only once a day (at midnight! Worked for me!) and I was able to sleep OK with it - perhaps you could try asking for a slow release version of what you are taking, so that your sytem doesn’t get a massive dose of steroids all at once?
X
S
I get one dose of Steroids on Wednesdays in with my chemo cocktail, which is much better than the first time around when I used to have them for 2 or 3 days. The day of treamtment I also take Nytol so cannot stay awake and sleep the whole day. This is the start of my sleep pattern mess up, as that night I do not go to sleep before 1am. The next night I feel the steroids wear off , and if I have trouble sleeping I take 1/2 a Valium, but I do not have secondaries in my liver, so don’t know if that would be acceptable for you
My problem seems to be more waking up than falling asleep, as I have accepted that I feel a bit better in the evenings and therefore make use of this feeling by going to sleep later, and then I sleep away the morning!
Hope that you work something out.
Best wishes,Penny
Oh I remember it well, the lack of sleep and being unable to do anything constructive when I was awake.
I don’t remember having steroids with vineralbine (navelbine) so presumably it’s for the 5FU. I did have steroids to reduce the inflammation in my liver in the summer so maybe it’s for that otherwise.
You need to check the liver thing out with your onc as there is a difference between having liver secondaries that are not effecting your liver function to if your liver function is poor but you can’t take risks. My experience is that the oncs will give different combinations of drugs that a GP or another doctor would never give give together so I know my local pharmacy are not keen on my cocktail of drugs but the oncology pharmacists are not worried.
This lack of profiles is beginning to get me again as I know nothing about you apart from the detail you just gave and so makes it difficult to reply.
I do take sleeping tablets but they never used to work if I was on a high dose of steroids but they do now which is probably a reflection of how ill I really am.
I know wednesday seems a long way off with no sleep so can you ring any chemo helpline at your hospital to see what they suggest. It’s a nightmare without sleep and I think they should be able to suggest soemthing that would help you sleep but not be too zonked out that you can’t drink.
Are you in hospital for the 72 hours of 5FU? I know the ladies with bowel cancer were in every 3 weeks for that and seemed to be up all night due to the amount of fluid they were infusing and the diarrhoea it caused but I have no idea if they were on steroids.
Give someone a ring at the hospital and see what they suggest.
All the best
Kate
I had terrible problems sleeping whilst on FEC. No problems on taxotere although still taking same dose of Dexamethasone. Maybe I got used to it! Anyway whilst on FEC I tried lavender oil. Burning it in a burner in the bedroom and putting it on a tissue under by pillow. Also wiping head over (no hair!) with it mixed with baby oil. I found it did work and was very relaxing generally.
On FEC I found this really tough - the lack of sleep made a bad situation with fatigue even worse. Second time round on taxotere I asked to be prescribed sleeping tablets, which I was and made a difference to helping me sleep - I only took them on the steroid days, and figured I was going to feel groggy anyway, so a bit of sleeping tablet grogginess on top was better than the no sleep problem without.
I know not everyone wants to take more tablets - but just thought I’d let you know this did help me, and if you are getting desperate (as I was) could be worth asking.
x