Hi lovelies, I’m just looking for some reassurance please.
I started Carbo/caelyx last Tuesday, took all the required meds and thought I might be getting on with my life by now (!). However, I am totally unable to shake off this awful feeling of dizziness and slight nausea. I have an appetite, although strong smells make me feel queasy. I wonder if anyone else has found a solution to this or if I just have to sit it out. I’ve also got toothache and a sore nose which I’m having seen by my dentist and gp respectively, but the dizziness is really vile and I’ve got to go on holiday on Friday!
Apart from that I feel great! Hope everyone is as well as they can be with this bollocks!
Lots of love, Ali x
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Alifit
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I have always had relatively low BP but it could have a bearing on things. You are of, course right about the hydration So I’ve knuckled down, stuffed down a couple of litres of fluid (how can water taste so horrid?) and been for a walk. Still a bit wobbly, but I think I just need to pull myself together a bit (I was being a bit weedy!)
Hi Alifit. You don't have to sit it out. Contact your clinic and let them know so they can either prescribe for you or let you know what to ask your doctor or pharmacist for.
Hi Lovely. I know exactly how you are feeling. Did you have Emend on day of chemo plus two days after? The first time I did and on the third day, when I didn't have Emend, the nausea started plus I felt as if I had the worst hangover on the planet. Stonking headache, dizzy, sick and thoroughly rough around the edges. Spent two days in bed groaning with a bucket. So, told the doc and he extended the Emend by two days and hey presto! No nausea or sickness as the Emend took me past that stage. And, as soon as I woke, hubby did me a slice of toast and a glass of milk to have with the Emend. It was as if I was pregnant again as it was the only way I survived morning sickness way back when (without the pills of course). Even with the extra Emend I still had the headache and felt as if I had a hangover, but without the sickness and nausea it was bearable - so long as no-one made a loud noise. By day 7 or 8 after the second chemo I was as right as ninepence. Had to keep an eye on the skin and I did get mild flaking but nothing to worry about. Got a weird taste in my mouth now and then but kept drinking water or no sugar drinks and I was fine. My bicarb mouthwash three times a day after meals really helped to take the taste away.
Be warned though. The slightest drop of the booze may make you feel worse. It certainly did for me. Like a notch up on the hangover feeling I already had.
So, my solution is to ask - nay demand - Emend for 5 days. First day an hour before chemo the 125mg and then 4 days of 80mg. As I mentioned in a previous reply to someone in Australia, it's expensive but costs no more than a hospital administrator's lunch so demand and stamp your feet until you get it.
I suppose the good news (not that there is any for me) is that I won't have to have the orange toxic waste anymore but I'm staring into the unknown with the next one. The thought of losing my hair again is really getting to me now, especially as someone commented on my "lovely curly hair" today.
I do wish you every success with carbo/caelyx. Just because it didn't do anything for me is not to say the same will apply to you. Big love and hugs. xxxxxxx
PS Meant to say that after the third dose I did the same as for the second dose and no nausea. I'm 2 and a half weeks after the third one and feel fine - although I notice my neuropathy on my left hand is playing up today. xx
I asked for extra Emend at the start of treatment as I had a concern that this might happen - it was not forthcoming. My prescription for Ondansetron was only for two days too - last time I was given enough for five days with a choice of when to stop. Some of this has happened due to a change in hospital - although I still have the same consultants, they are now based at a different hospital which has, I assume, different dispensing rules (it’s in a different trust). My appetite is fine, so I don’t really feel sick as such, just nauseous when I move around.
I’m on the phone to them first thing - I’ve got a really aching back now, probably from inactivity so I need to get this sorted ASAP.
I have all my bits and bobs crossed for your next regime - please let me know how it goes.
I can only echo Kryssy's advice. This is what I've been doing too.. insisting on a 5 day Emend supply, which really makes a difference regarding nausea.
If the NHS doesn't pay for it, is there an option for getting a prescription but self-funding the Emend? Here in Germany, it costs around 100 Euro for a 3 day supply. Or try a few different GPs?
I sympathize with you because my oncology ward doesn't give out Emend either without the patient pushing for it.. but at least then it's available (most of the time; depends on the duty oncologist, which is why I've sourced one dose via my GP instead).
Did you try Voloid for anti-nausea its used for vertigo too although its very good one of the side effects are constipation you may need to take movicol, or even phenergan may help they are used for hayfever motion sickness, allergies but they make you very sleepy, Try and get something today or tomorrow so you can try it out before friday
I looked Voloid up - turns out it’s an American rock band! I then made an adjustment and found Valoid which is a drug I’ve heard of but never used. I’ll mention than when I call the unit in the morning. I know that if you are prone to motion sickness then this is more likely to happen, but I asked my GP about Stugeron and he said it might not work.
I’m just going to go to bed now and see how things are in the morning. Thank you so much for your help and support.
Hi there, I haven’t any experience of the dizziness ( I have had two lots of 6) this is my second line and unlike Carbo/Taxol last year I do feel like I did when pregnant regarding the nausea so have taken more of the anti sickness meds, but what really works for me is eating little and often and drinking loads of water to flush it through.Hope you find what works for you and you start to feel normal pretty soon xxJulia
Done these two drugs and worked for me. Caelyx is very hard on the skin. Main problem at end of treatment was bloods was very anemic had blood transfusion. Fatigue and dizziness yes. Go with it and drink loads. The weather is the main problem for us ladies heat exhaustion heightens fatigue. I did caelyx in winter and couldn’t bear my body getting overheated. Good luck
Hi Mlowery, yes it is an odd one isn’t it. My skin is ok so far, but I’m slathered in cream - a feeling I hate, but will tolerate if it works. I would just like to know that I will be free of this feeling for some of the four weeks between.
Things will get better Alli as with all the treatments there are still so many good days in between. It’s how we manage them. I found this treatment easier than front line. Love Maureen
Hi Ali. I know what you mean about even plain water tasting horrid. I’ve found a slice of orange and/or lemon in the water helps. Also if you’ve got some garden mint, wash half a handful of leaves and put in a mug. Fill with boiling water and stir roughly to squash the leaves a bit. Steep for 3-4 mins then fish out leaves and drink. You can add sugar if you want. Hope you feel better soon. Love Jo 🌹🌻🌸🌼🌺
Oh that’s a lovely idea - I’ve just sent the bloke two floors down to get me iced water (ice seems to help), so I’d best not change my order now! I’ll give it a try tomorrow.
Hi Ali, I've been on carbo/caelyx for 3 cycles due to have a scan this Friday and I've been feeling great! However I did experience a slight nausea too during the 1st abd 2nd cycles, however I f oh und that with 1 of those anti nausea tablets it settled down! However when I was on carbo/taxol I did feel rotten, so I'm sure things will improve for you on carbo/caelyx! Enjoy your holiday!xxxxDawn!😀💖💗🎀😀
Oh thank you Dawn - I do feel a bit better today, although I’ve not done anything so far! I think I’ll still Phone for advice because I don’t want to feel like this on the next cycle. I have to keep reminding myself that it’s doing a job as well as making me feel ill.
I hope your scan gives you the results and that all carries on going well.
Thank you. I’ve talked to my CNS who advised taking Ondansetron and Movicol in equal quantities. I do feel better this morning but I’ve taken the tablets and see how I go. If they work I’ll ask for more next time. We’ll see.
Hi Ali .. oh dear .. ask your doctor to check sugar levels too .. Ive been dizzy and blurred vision on carbo/caelyx.. anti sickness pills helped me and small meals often too . Hope you feel better soon .
Make sure the moment you wake take antinausea meds, don't wait. Also if you need to throw up, throw up. Caelyx is a very strong antibiotic. Take with some type of food if you can. ❤❤hope it works for you. Liz
You have wonderful advice here but a couple of other things (I didn't read them but maybe they've been mentioned)--taint your water with other things. There is a drink here in the US called Vitamin Water (and Vitamin Water Zero) that has oodles of the vitamins we need, especially during chemo days (B6,B12, C, etc. and minerals) and I put about an inch into a full (LARGE) glass of water and it tastes like fruit punch--much easier to down. Also, has anyone mentioned steroids for a few days post-chemo? They did that for me when I was having nausea after treatment (tapering down over 4 or 5 days). Assume it helped because no more nausea (I had ondansetron at the same time). Did not have dizziness....might be related to your other issues (toothache). When I have a tooth ache, it sometimes hurts my ear so that might have a correlation and may go away when that is treated. Wishing you luck and smoother sailing once you get this sorted out. oxox
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