H Loocie
Great to see you back. Missed your posts. Hope you are feeling much better. Take care of youself.
Lots of love
Karen xx
So pleased your home Loocie!! Will do look good feel better soon!! Enjoy your shower! x
Ditto the others - great to see you back Loocie. Hope you are feeling much better and back to your chirpy self.
Lynn x
Hiya Everyone,
I’m new to this site, but have been reading all your posts over the last few weeks with great interest. I was diagnosed in sept and had WLE and lymph node removal on 1st Oct (which were clear), and have just had my second lot of chemo, but the sickness and nausea is awful. I seem to remember someone mentioning a drug beginning with ‘e’? At the moment I’m on ondansatron and metacloprinide, both of which seem to be having little effect. I’ve already been in hospital for a week with neutropenic sepsis after first lot of chemo, and am desperate to eat to keep my strength up as soooo don’t want to go back in again :0( Any recommendations would be gratefully recieved, and all the very best to everyone, Amanda xxx
Hi Amanda,
Sorry you have had to join us, and really sorry to hear that you have been in hospital on your 1st cycle - but if we can be of any help we all will.
I have had x3 FEC and now on Tax. I found the nausea pretty awful for around 11 days. I think most of us have but a few haven’t been as bad. The drug you are thinking of is EMEND or APREPITANT (same thing) and I found it by trawling this site and googling it. I found that it was really good in preventing vomiting (which is good) but it is not so helpful in helping the nausea. I used this with a different range of anti-sickness drugs each time. I found Ondansetron OK but very constipating. None of the others particularly worked. On my last cycle of FEC they gave me Nozinan - which was pretty good, I think it is a relaxant as well as anti-sickness. I took the steroids they suggested but these seemed to tweak up my stomach. You need to nibble something before having them. I found that if I actually ate something like a piece of toast or a banana and then take the tablets it wasn’t so bad. I ate things like a jacket potato in the evenings - just small portions of anything seems to control the nausea. On the second cycle you might find you crave carbs - most of us here did. It’s quite bizarre - in the second week of FEC most of us were having a 2 hourly diet of cakes, currant loaf, belgian buns etc, all very unhealthy but you have to go with what your body tells you.
So for Sickness/Nausea I took (but it is all an individual thing)
Emend
Ondansetron
Nozinan
Dexamethasone (steroids)
Cyclizine, Domperidone - I found didn’t work for me, but there are others.
Difflam or salt rinses is quite good for the mouth and furry tongue. Nystatin suspension for preventing thrush or fluconazole tablets. Omeprazole or Lansoprazole for indigestion.
Reading this back it looks all a bit much but after the first cycle I think you will start finding what works for you and you can discuss it with the team when you go back in. Good luck.
Lynn x
Hi everyone, Loocie glad you’re back and hopefully feeling better. Hope everyones not to bad.
Marli Hi sorry you had a bad time, hope Weds is better for you, must admit not looking forward to it , still 1 less, the 3 weeks have flown by.
Most of my hair’s gone, had my wig on this morning,OH says looking good I’m not sure about that, still it’s an improvement on the wisps.
anyone had a sore vein after 1st chemo?
Take care all Love Kath
Hi girls,
Lynn you forgot to add cheese straws to your list!!!
Well tomorrow is the first Tax for me, I have had all my steroids today and anti indigestion and had my blood test so bring it on… thanks to you ladies I am actualy not too worried about it. I think the thought of no or little nausea is making me feel better about it. I do understand that there are other unpleasant side effects so perhaps I shall think differently in a few days!! It is just great to think that it will be another one done. My next is on New Years Eve so I shall be a cheap night out.
I will get antibiotics tomorrow which I think I have to take from day 5 for can’t remember how long which helps with any infections.
Kath I get sore veins in my lower arm usually at their worst the week before chemo and then feel better after the cocktail. I am hoping they will hold up so I won’t need a line.
Amanda, they will sort out your sickness and the girls here who had the same problem will give you more help.
Good luck to you ladies having their next cocktails this week, and those recovering keep up the good work we are all moving nearer to the end of this horrible stage of our lives. Loocie hope you are feeling a lot better and Marli too.
Love to you all, keep smiling,
Jane xx
Hi Jane
Good luck with your first Tax tomorrow. I have my first one on Thursday and should have my 2nd on New Years Eve also. Have got my steroids to take on Wednesday so that should be interesting. Let me know how it goes. Love Karen xx
Morning ladies
Good news for me - I’ve finished chemo!
Hit absolute rock bottom this weekend, mentally speaking, mostly caused by the endless hot flushes which has really got me down. Also serious problems with very low esteem caused by my (as I currently see it) disgusting body which I can’t bear to look at or think about - result of drugs, increased weight, sweatiness, hotness, baldness etc. etc. etc.
Cried all over the OH all weekend, cried all over the BCN yesterday, managed not to cry all over the oncologist lol. Anyway, the oncologist said he didn’t think any more chemo was in my interest - too many side effects for marginal return so recommended I finished now, to which I said oh yes please, or stronger words to that effect! He’s also given me a break from any more treatment or drugs till the New Year - I won’t get rads till Jan and I don’t have to start tamoxifen until Jan either. So I get Christmas as a holiday to recover and get my bloods back up to scratch and hopefully sort out the other embarrassing problem!
But he has said I can take evening primrose oil for the flushes -he said avoid anything else, particulary black cohosh which can affect liver enzymes, and avoid most other herbal stuff. And he’s given my some anti-depressants at a low dose which may help with the flushes. I took something similar once for facial sinus pain and only took one tablet as it made me feel like I didn’t ever wake up! Hope these ones don’t have the same affect.
So I celebrated by having a little retail therapy - or more likely a mega shopping spree in my local department store who had some absolute bargains in the petite clothes section. I’m only 5" tall so find it difficult to get clothes to fit, particularly now I’m so overweight. It’s all gone on the credit card as I have no money - but as the woman serving said - ‘you’ve saved yourself about £300 there’, lol .
Anyway a weight off my mind, still having hot flushes and a bit nervous about taking the antidepressants, but will give them a go at least.
Now have to stop eating all the stodge and get fit again - no excuse like the drugs to blame things on any more. Oh and I can get rid of all the bags of drugs and the sharps box! Just the hickman line removal to get through - not looking forward to that one but will be glad to see the back of it.
anyway to all of you still going through the nastiness - there is an end in sight and it feels good when you’ve done it all. Make the most of an excuse to eat as much cake as you want, it won’t last for ever!
Hope you all have a good week and keep those nasties at bay!
Helen.
So pleased that chemo is over for you helen.I know how much it was getting you down.
R xx
Hi all, just thought I’d dip in as I didn’t get the chance yesterday. Was busy flopping about on my own settee, amongst my own things with my socially deprived moggie 
I am SOOOO pleased for you Helen. The fist of us to be liberated, must be a wonderful yet strange feeling for you? Just think, you’ll getting your life back together and moving forwards which will be fantastic, but I would also imagine quite a daunting task in itself? I’m so chuffed for you - you did it, quite spectacularly too! I think the others will join me when I say that I feel all proud of you ;0 I did have some acupuncture a few days after my first Tax and complained the the acupuncturist that I was having hot flushes, and she was able to help on this one. I haven’t had a flush since - would you be willing to give it a try if you could find someone to do it for you?
Also pleased to report that I’m back on the cheese straws and they are going down a treat…good ol mum! Speaking of which Jen1 my mum has sent you an email; hopefully you’ll be able to start a thread for the mums out there.
I felt so bad posting about how dreadful I was finding Tax, but had nothing else to blame my feelings on…until the infection came out. I really hope I didn’t make things worse for those just facing the Tax? I was also grateful that Gemjunkie posted to this effect on my behalf, whilst I was laid up. Thanks luvie, and I hope your relationship with Tax is better than the one you had with FEC!
Has anyone got a solution for REALLY dry, flaky skin. I think a leppar would be mortified by my skin at the moment, and no ammount of emulsifying ointment, baby oil etc is helping. I am a revolting scurf ball at the moment - which is fetching with the piggy eyes and rapidly evaparating eyebrows. Would be grateful if anyone has any tips.
Can’t tell you how lovely it is to be back amongst friends, ahhhhh
Keep perky ladies, we’re are getting there, and will soon be joining Helen in chemo free land - bit like Chicken Run isn’t it?
Lotsalove to all
Loo
xxx
Thanks Loocie and Rach.
I suddenly feel so much more cheerful about life - I wonder why?
Loocie, I’ve been having acupuncture from a Chinese practitioner right through the chemo, and he’s adjusted the needles according to the symptoms I have, including the hot flushes and even weight gain! Anyway, I have an open mind but I don’t think they’ve done any good, and the flushes are carrying on apace - even despite the absolutely foul herbal concoction he gave me which I probably shouldn’t have taken to be honest.
I always come out of acupuncture feeling incredibly relaxed and chilled, although I don’t think it has had any other effect. If that’s all it does, then I’m all for it and I have just signed up for another course of six, so will continue into the New Year with it.
Hurry up and join me back in the real world, ladies, or should that be Rads land! It could be party time!
All the best and keep up the good work killing off those nasty cells
Helen.
Hi all
Great to see you posting again Loocie. Really pleased that you are out of hospital and back in your own home. Hope you continue to be infection free. When is your next lot of Tax?
Helen great news about no more chemo. At least you will be able to enjoy christmas and perhaps have a drink or two! I have my first Tax on Thursday, dreading it! Have got my steroids for tomorrow does anybody have any advice on what time to take them as the breast cancer nurse told me to take 4 in the morning and 4 at night. She said I wont sleep and will be high as a kite - great! Another question (sorry) has anyone found a drink they actually enjoy after chemo. I went right off water with my last lot of Fec. I tried all sorts of drinks. Coke, diet coke, fizzy water, flavoured water, ginger ale. At the moment I am drinking diet lemonade which tastes ok but worried about not drinking enough after chemo as it made me feel sick. Any advice would be greatly appreciated. Good luck to those having chemo soon hope the side effects are short lived.
Take care all
Lots of love karen xxx
p.s. Loocie - did the acupuncturist put needles around your belly button? Mine said it was for hot flushes and losing weight - but it really hurt as opposed to the others which generally don’t. Bit bizarre!
Karen
my advice for drinks - fruit juice, I found Sainsbury or Tropicana tropical mix with mango mixed with valencia orange - all fresh, not from concentrate was good. Also Bottle Green elderflower presse - slightly fizzy to cut through the furry mouth, but not too sweet. These two worked for me. Sainsbury are selling Bottle Green for £1 a bottle at the moment - half price. You can also get the cordial and mix it will sparkling water yourself. The other thing which was good was orange juice and lemonade mixed.
Drinking soup or fruitjelly also gets fluids into you. I found miso soup excellent.
I also bizarrely went off water - isn’t that odd? I normally drink loads of water. And as for a cup of tea… forget it. Just about back to enjoying tea again now.
Hope that helps
Helen.
Hi again
Helen - no the acupuncturist didn’t put the needles in my belly, there were four in my legs. Two in the fatty part just below the knee, and two in the inner part of the lower leg, just above the ankles. Wonderful for all things female according to my lady. How strange that there is such a variation?
Karen - Like Helen I normally drink gallons of water, but no longer enjoy it. I also tried the bottle green elderflower which is very palatable (thanks for the heads up Helen that it is on offer at the moment). I have also found Lift lemon tea quite good as you can make it as strong or weak as needed, and drink it hot or cold.
The only way I have successfully managed to get rid of fury tongue is to mouthwash with Corsodyl (evil stuff) three times a day for about three days after having the infusion. It is foul, but is effective.
I take my steroids at about 8.00am then 2.00pm, but don’t get high and buzzy or anything (mores the pity). It was agreed by the chemo nurse that these times would be OK, and I follow the same pattern on swamp day (although the second dose I have, is IV dex when I’m there instead of oral).
My next lot of Tax is on Monday (can’t believe how quickly that came round), and although I’m not looking forward to it, I’m not worried by it now that I have had one dose. You have managed to get through the FEC and there is no reason for you to be worried about facing the Tax - you (like the rest of the folks) are obviously made of stern stuff, so although it will be a big ask, it will be do-able. Just be easy on yourself. It is a bit of a waiting game as you wait for the SEs to kick in, and once they come they will take a while to go, and that is where you need a bit of inner strength. Be patient and they will pass. I’m sure this is how it would have been had I not got the infection. I’m expecting to have five days of SEs once they start, and now I have a rough idea of how long I’m going to feel rotten I can accept it. It really is an unknown science until you’ve had one cycle of the stuff.
I’m keeping everything crossed that your (all Taxers)experiences are as SE free as possible, and that if you do get them, they don’t last too long.
Big hug to all
Loo
xxx
Hi everyone. Had my first FEC week before last so getting ready for the second on 18th. It’s been good to see that most of the SEF’s I’ve experienced seem to be the norm with most people - nausea, amazing furry tongue and a sinus ache. I was pretty sick straight after my infusion partly I think because I had some soup to eat after - what would anyone recommend to eat shortly afterwards to stop the tummy rumble? My 3 FEC will then be followed by 3 Tax - is this really going to be much different from the FEC SEF’s?? Would appreciate any info. Also has anyone tried Aloe Vera Juice before chemo to help with the nausea?
Hi All,
Loocie - Great to see you back Loocie and glad you are feeling better and back to your chirpy self. You’ll know what to expect next time and may it be an infection free time.
Helen - Hooray, you’ve done it…a little celebration is in order I think. You are prob the first to finish on here. Then on to Rads but I don’t think that is anything like chemo except for some fatigue. Anyway I expect you are so relieved - well done!
Karen - I found any drink on FEC difficult. The only drink I sort of could drink which is not as healthy as the ones that some of them have mentioned here is Sainsburys high juice grapefruit squash which is not too sweet. But on Tax you can drink almost anything from day 1 as you won’t feel anything like as nauseous even none. I wasn’t able to drink tea for 11 days on FEC but ok on day 1 of Tax.
I also take my steroids same sort of time as Loocie - sometimes forgetting the pm ones and taking them at 4pm. If you take them too late you may not be able to sleep. Unlike Loocie I get jittery (not nervous) but just awake and able to do things!
Just returned from 2nd Tax today - pleased that my cells were pretty good and was able to have. Only thing is my haemoglobin is dropping and might have to have a blood transfusion next time. Got to eat plenty of spinach apparently! Apparently too the only reason for my aches and pains that went on for 11 days (usual is 2-5 days) was that I took an injection of Neulasta which helps boost your cells but the downside is that the aches go on much longer…so just to let you Karen and anyone else that my symptoms were not usual. One tip - if you do get the metallic taste in your mouth (seemed to remember it came on around day 3 - unhealthy minty chewing gum cuts across the taste. And when that gets better and the taste becomes bland, again strong food with garlic, stir fry’s etc are good, and again the minty chewing gum. But I felt great on day 11 and was able to go out and about all last week. You’ll be fine Karen - you shouldn’t get the nausea and it is just the fear of the unknown which I know can be daunting.
OMG - just waiting for the s/e’s to kick in on Friday. Am really tired now as it is such a long day so off to bed.
Good luck to all this week
Lynn x
Hi Ladies,
Helen, good for you girl, yes we are proud of you, now take it easy and be kind to yourself.
Yes I went off water, even tried fizzy water but that was yeuch too. Last FEC I drunk lemonade but found it a bit sweet but def preferred it to warer. No tea for a good week.
Well, had first TAX today and if it was FEC would def not be on here tonight!! At the moment I feel absolutely normal (is that possible) although I know it won’t last. Yeah no nausea (yet) and have had a proper dinner tonight and later a cup of tea.
Didn’t have a good night last night. Had my steroids about 6pm and was still awake at 3.45am. I have been give a mild sleeping tablets so will try one tonight although I must say I could have slept this afternoon but had to get the xmas tree up. Its not knowing how long before the SE’s hit and you have to rest up.
I’ll keep you posted Karen but good luck on Thurs. They put mine in slowly over about 1 1/2 hours in case of allergic reaction and I think that was the worst part of it, it was SOOOO boring. Took a book but couldn’t really settle, tried to doze but had another person in the room so felt a bit awkward and didn’t like to chat with OH and leave other person out of conversation.
A question - after 3x FEC I have noticed when inspecting my almost hairless bonce that the remainig hairs are def longer and I also noticed that my eyebrows although a lot thinner actually needed plucking last night. They did come out easily but at least had grown. My eyelashes are still there but a little sparse in places. Do you think the eyebrows and lashes will still go or might I be lucky and keep them now?
Love to you all, keep smiling,
Jane xx
Hi Mini,
Just a quick one to answer your question as I’m off to bed. We were told to have a light lunch before FEC or if you are having it in the morning a light supper. I have just got back from TAX and have virtually no nausea but still only had 2 pieces of toast. When I had my first FEC I woke up at 2am with nausea. I forced myself to nibble a piece of banana and then take my anti-sickness meds of Ondansetron, and dexamethasone. On the second and third cycle I didn’t feel nauseous till 6am and did the same thing then. Drink as much as you are able although I found fluids difficult. If you eat a little and often you will combat the nausea along with the anti-sickness meds they give you. The first night afer FEC I would have a jacket potato with a little cheese or a well cooked scambled egg on toast. It is surprising how you feel better if you eat a little. It’s a bit like having mega morning sickness where you need to eat to combat the nausea. If your tablets don’t work tell them next time so that they can be tweaked. You need to make sure you use a mouthwash like corsodyl or difflam or salt rinse with sodium barcobonate regualarly to help the furry tongue. If you feel it gets thrushy then you would need something like Fluconazole. If you get indigestion you might need omeprazole/Lansoprazole.
Actually let me or the others know if you want any more help but If you read the answer I sent to Amanda further up it covers pretty much the same things. Very best of luck
Lynn x