Don’t forget to check your temperature, as the sore throat and generally feeling rubbish can also be a sign of infection, which needs instant treatment if your white blood cells are low.
I would definitely call the hospital tomorrow, you’ll probably get the quickest response from your BCN. Tell her exactly what you’ve been going through, and see if she thinks you need to speak to your onc or the chemo team to adjust your meds now rather than waiting for the next session.
I was horrendously sick straight after FEC1, vomiting from all orifices, and was readmitted that night to help stabilise the vomitting. After that I was on emend for the next 5, and the difference was amazing. I slept a lot (no choice about that one!) and felt knackered most of the time in between when I was awake, but didn’t get the concrete guts, or vomitting at all, and only the odd queasiness occasionally, so it felt like completely different meds.
So glad you’ve had people rallying round for you, that will make all the difference. Hopefully you won’t feel as pants as you do now all the time, you will probably have some much better days, but when you need the help, ask for it an accept any that is offered.
It might really be benificial to ring the Helpline. They can point you in the right direction and perhaps help with your fears. The number is tel 0808 800 6000. This is a horrendous ride at times. We have all had our days when nothing anybody can say or do will help. Your partner too may find the Helpline a useful resource of support for him while you are going through so much. There is also Peer support available for both of you if you should want it.
I hope things improve for you soon. Do use your BCN and the Oncology team. There are perhaps stronger anti sickness remedies.
Best Wishes
Cackles
It sounds to me like as a first step you need some of the really strong anti-sickness because I know from experience that if you don’t feel sick you feel more able to cope. You should ask and if necessary shout for Emend which is the strongest anti-sickness on the market. I didn’t realise (as I have had all my treatment private) that it isn’t always given as a first option on the NHS as it is expensive, but it is by far the best.
So shout, scream and stamp your feet for it. It really will make a huge difference.
Sorry to hear you are feeling so crap, I start my chemo on Monday and am terrified of how its going to make me feel I hate feeling ill too
If you are feeling anxious, it would’nt do you any harm to get some medication to help with this, if used properly they are not addictive, and can be taken on the day your next chemo is due, it will help calm you down.
I really do hope you are feeling a bit brighter soon
Hi Leeds - I hope when you read this you are feeling a bit better! I am on Day 8 of the AC regime which IS short and sharp (can’t remember if you are on AC or not?). I had all the same SEs as you, so won’t repeat them again!! I am just starting to feel normal again. I am usually a positive, bubbly, easygoing person but have turned into a witch - in fact OH just told me I’m turning into a Rottweiler - ha ha!! I had Ondansetron for anti-sickness (I wasn’t actually sick, just horrible nausea) and the frickin steroids which I think make you feel disgusting in themselves. And the constipation doesn’t help either!! But when I go for my Nadir blood test on Friday I am going to demand Emend - I read from a lot of people on here that they are the best. I really think its the combination of all the SEs that gets you - and I also am not a weeper but I’ve turned into one lately and short-tempered and angry and down - I might investigate the anti-depressants too! I sometimes feel I would like to be whisked off to a Haven for the whole time and come back in 4 months feeling better and I don’t have kids at home - just 2 dogs and OH who are copping all my flak!!
Anyway everyone here is with you and i really think you need to talk to everybody in the BC team and get some action!
Sorry for all the new starters reading this - chemo is unfortunately not a walk in the park but as everyone says it is doable - we just have to remember to speak up and ask for help when we need it!
As you will see from my previous posts I had AC chemo and also Emend for sickness. I am a total fan of that, as AC is so brutal. I had it with Grandestron (not sure of spelling), Dexamethasone and Domperidone, so was filled up completely with anti-sickness. The Emend you take for 3 days, the others you take for 5 and then the Domperidone you can take for the whole time 3 times a day which I did. I wasn’t taking any risks with the sickness. I found that not feeling sick I could at least function, so therefore felt better in myself pyschologically.
Thanks Sam - yes I am ready to jump and shout to get Emend and i am going to write down the others you mentioned and speak to them about them too. A couple of days ago I was like Leeds - ready to throw the towel in especially as I was borderline anyway. But I will keep going. Next dose is 8 March so I’ve got a little while to feel better and forget what it was like. As I write, I am having a glass of wine - first one in well over a week - most unlike me!
Can I ask - after your first dose - were the next ones just as bad or did it get easier?
Jan, for some it’s worse, for some it’s the same and for others it’s better. There are no rules to this, which makes it even harder to deal with and plan for. For me FEC 5 was the worst by far, but it went in really quickly. 6 was better.
Edit: sorry, phone likes to stick in odd words here and there, so posts end up meaning absolutely nothing… odd words now removed.
My first AC was by far the worst. I don’t know whether it was the shock to the system or what. Or whether by the second I had got a handle on the side effects so had enough drugs to counteract them and could take them before they happened. My other bad side effect was a sore mouth and ulcers but this was made worse by the fact that I have a brace at the moment too.
For me the second set of Paclitaxol was worse as I was having it every 2 weeks and the big 3 hour bag, so I quickly lost all feeling in my finger ends and toes and the tiredness and weak muscles hit me like a brick. I also found I got more colds and infections. Mind you it was winter this time last year when it was thick of snow so obviously that didn’t help. I would have quite happily had more AC by this time. But apparently the Taxol is better at shrinking tumours.
The numb fingers and toes were the worst, I did think at one time I wouldn’t be able to go back to work as I wasn’t able to type, but gradually from about a month after chemo finished in March last year to July feeling came back. My fingers are normal now and only slight tingling in my toes when it is really cold.
Hi all,
I,m having 6 TAC and have just had number 3. To be honest, I have felt like hell all the way through. I jihad a week or so of feeling good after round one but since number 2 it,s just been a slow grind of nausea and tiredness. I,m not saying this to worry anyone, I just think that sometimes we expect too much of ourselves. We here how others have sailed thru chemo, working all the way and expect the same thing but everyone is different,and you aren,t failing or letting the side down if you need to lie in bed for a few days. I was given Emmend for the second cycle and it made me feel worse! I have a five year old and it,s horrible to feel so I’ll and feel like there,s things that need doing, but except help and be kind to yourself,
Herbi x
Thanks Sam and Herbi - I guess I’ll just have to wait and see - and hope like hell its gets easier or at the very least no worse! I can’t believe some people are able to work thru this journey - my commute into London takes about 1.5 hrs so there’s no way I fancy doing that morning and night. I’m a secretary so although its not physical work I couldn’t imagine anything worse - let alone the risk of infection when your nearing Nadir etc. I still feel nauseus most days so am definitely going to ask for different or better anti-sickness meds next time. Planning my vege plot at the moment - thats as close as I get to physical stuff apart from walking the dogs - its like spring here today - 18 degrees!!
I know what you mean about some people working through. There was no way I could. Mind you I was having it every 2 weeks rather than 3 so I only had a few days where I felt sort of ok. I also work in London as a secretary and have a 1 hour commute each way. I went back to work in August last year having finished rads in June. I have just finished my 1 year of Herceptin and still get tired some weeks by Friday.