No tax trots! Bunged up instead. Knees seem a bit swollen? Is water retention normal??!!
Hi all!
I’ve not posted on here for a while but I’ve been reading all your posts and with you in spirit.
Jackie - love your post - it’s so true, I couldn’t have said it any better! I had some friends staying for a long wknd, myOH took two days off work and we all had an amazing time - wandering around London, eating, drinking, cooking, chatting. I forgot all about this and remembered that life is still there.
A friend of one of my very good friends died from BC last week. I didn’t know her but she was young and had beaten it once. It’s so bloody horrible and unfair.
I hope those of you changing drugs are coping well. I have my first tax this Thursday and am pretty nervous again but it has to be done!
Blue - here’s my account of EC. Hope it helps! Apologies to everyone else for the huge post.
I had 4 rounds of EC and tolerated it reasonably well (according to the onc). I was given some anti-sickness and steroids through IV on the day as well as an emend pill an hour before chemo.
E given through 2 big syringes and is red. Took about 15 mins. I found it was better to not look at it nor breathe through my nose as the thought of it afterwards made me feel queasy as did the smell of disinfectant. All psychological I know but that helped me.
C was given in a drip for about half an hour. There was some saline in between and after. The whole chemo bit took an hour but with the other drugs, consultation etc, I was at hospital for about 3-4 hours.
I was given emend, steroids and domperidone pils to take for the following 2 days then just donperidone 3 times a day until I felt back to normal. Emend is the best antisickness and if you’re NHS you might need to ask for it as I don’t think they always prescribe.
Drink loads of water to help flush it through for at least the next 72 hours. I found this helped with SEs too. I was also given the white blood cell boosting jab to do at home 24 hours after chemo. This made me feel achy for about a day but worth it to help immunity. I have a snotty 2 year old at nursery and only got sick once in 12 weeks.
I found the most sicky I felt was the evening of chemo day and would go to bed to get rid of it. I never threw up but did find the sick feeling got worse on the 3rd and 4th rounds. Chemo day was Thurs and I would crash around Mon/Tues and need lots of naps. Thur/Fri/Sat nights would be awake from the steroids - I would not take them after 12-12:30pm.
I found SE felt like a very bad hangover - foggy head, queasy, tired - would feel better through eating carbs, sleeping and getting fresh air. I would be back to myself within a week and energy would return.
The anti-sickness drugs and steroids made me really constipated which caused piles and tearing (sorry - TMI!) so I would start taking senna and lactolose from the night before chemo for a few days which really helped.
I founds it helpful to have some boiled ginger and sour raspberry sweets for the queasy days and to give into sleep whenever it took over.
I thought about sending this to you as a private message but then as we all have such different experiences I thought perhaps it was best to post in case anyone else wanted to share a different story.
I hope you’re all enjoying the sunshine 
xxxx
Scotty, I didn’t have fluid retention but I have heard of it as a side effect. Might it be the higher dose steroids too? I do get a puffy face for a week post infusion and attributed mine to the steroids and maybe a bit of fluid associated with that.
Wtp, thank you so much for your post, it’s just what I wanted to know. I didn’t know e was given in a syringe! Does the nurse sit and inject it or is it given in a syringe driver? I bet it feels almost like giving the lethal injection for the nurse if they have to sit and inject it?!!! A bag of fluid through a machine feels much less hands on. I get diarrhoea on tax and also have piles for the first time in my life as a result and am in agony! I dont know which is worse, 4 times a day on tax or not at all on ec?!!! So knowing about the constipation and tips of managing it will be helpful when switching to EC, thanks. I’ll make sure I get some stuff prescribed before starting! Your weekend sounds lovely. Hope all goes well on Thursday. X
Blue2,
Also be warned about the red wee from the Epirubicin (E). Nothing to worry about but better to know! In the middle of the 3 weeks when tastebuds go, I found Refreshers in a tube to be good to neutralise even if for a few minutes.
I am apprehensive about Herceptin tomorrow as having in thigh but thought it would be through port. Will let you know how it goes. Best wishes to all. Let’s all keep on keeping on.
Wtp - good to hear from you and great post. When do you start the Tax? Can remember if you are also doing herceptin with it.
Blue - like you I have young kids and whenever I think of not seeing them grow up I want to either cry of be sick. But as Jackie says we just have to go one day at a time and make the most of life as it comes. Today I enjoyed walking in the park in the sun although am now exhausted, but it was worth it. I keep holding onto the fact that by summer we will be done with chemo and even though I (and probably others) will be moving onto surgery of some sort, it somehow seems not as scarey as chemo. Does that sound a bit silly?
Me too re surgery over chemo any day! It’s much more manageable in my experience, and after surgery I felt I’d taken the first positve step on the journey whereas chemo seems to throw up so many anxieties and stresses.
Hi Slowski, good luck tomorrow. I hope your treatment makes more sense to you after tomorrow and it all goes smoothly and painlessly. And thanks for the info about the wee! How scary would red wee be if you weren’t prepared?!!! Are you planning to cold cap tomorrow? I haven’t lost much this last cycle, so will be capping again tomorrow. I think I’ll probably shed loads when I switch to EC as it’s supposed to be harder on your hair, so I might be in for a shock!
Ebim, I love the steroids too! I’ve had them today ready for my final tax tomorrow and I feel so much better than I have in weeks!
Egg, I too am almost looking forward to surgery! Compared to chemo the predictability of the experience and recovery timeframe of surgery seem within my control.
You haven’t made me sad Jackie, don’t worry. I’m easy to cry when I think of this journey and what MIGHT be (I have to keep remembering that it might not either!)
X
Dear jackie
Do not be sorry your post didn’t make me sad. It reminded me that we have to keep trying to enjoy life. The only thing that has made me sad during all this is not the fact that I am going through it but rather that my kids have to go through it. My danish friend with BC (sorry I keep banging on about her but she is said some things to me that really ring true) said that actually in a way this can be somethig that makes your kids stronger and for them and us to really value our relationships. So I try to keep that in mind whenever I feel like having a wail!
Good morning!
A quick question for all those who have had their fec/ec treatment and are now switching toTax…
How are your eyelashes and eyebrows…? Ive heard that fec/EC is worst for hair loss and tax for lashes and brows. I’m just about to head off for my final tax treatment and have sparse lashes and brows remaining and am wondering if they stay this treatment, will they stay when I switch to EC?!
Yes Blue I’ve heard the same. My eyebrows and eyelashes are noticeably thinner now I’ve started Tax. But they stayed put during FEC so yes you will probably hang on to what you’re left with.
I agree with everyone that surgery is way easier than chemo. In fact I’m a bit weird in that I quite like the general anaesthetic since it’s the best sleep I’ve ever had! I find the public reaction to the two is very different. After surgery I got cards, flowers, visitors, the works . On chemo I’ve been mostly left to get on with it!
I keep meaning to reply to all your posts but I’m going to have to take serious notes as chemo brain can’t cope.
Meanwhile can I just wish luck to all those having treatment this week and good luck to all those starting Tax or switching drugs of any sort.
I’m on day 7 of tax one. Tired and achy, sore mouth, taste buds affected. But no nausea.
Hope you’re all doing ok. Mooney, any news?
R x
Hi Blue
My eyebrows are still here after 3 cycles of EC. So are my leg hairs! ?
I want to ask all of you some advice. I had EC 1 and 2 into right arm. After 2nd EC right arm became very painful and tight below elbow and around elbow crease. I’ve done stretches/used cream etc but still sore, and Onc says it’s because veins harden up so nothing really to be done about it. Probably I should have alternated arms for cycle 1 and 2. Had EC3 into left arm and so far so good on that side. Shall I do EC 4 into right arm as it’s already painful (and leaves me one good arm!) or do those who have finished their FEC/EC and had similar think it’s better to do the other arm as otherwise right arm will he even worse. Onc and BCN don’t seem to have an opinion either way. As I understand the T is a bit kinder to veins so hopefully won’t be an issue after this last cycle.
Sorry for long post and hope it makes sense!
Good luck to all going this week.
Egg x
Hi sue
Thanks for your advice. I will be having surgery to remove lymph nodes on right side (the sore arm). Perhaps better to do last EC into that side again then rather than the left arm? And then save left arm for the T cycles and all the bloods etc that I might need post surgery.
Hi all.
Blue my eyebrows and eyelashes thinned through FEC3. I don’t know if I will hold onto them through the tax - I’m thinking not so I’m getting used to filled the eyebrows in at the moment. I still have underarm hair which is rather annoying! I had been looking forward to not having to worry about that especially under my surgery arm as I can’t touch that one due to possible lymphodaema and I have quite sensitive skin so don’t want to use hair remover stuff.
jackie thank you my dad came home yesterday after. Week in hospital it will be a slow recovery I think.
Very pleased that I have not had the the nausea I was plagued with all through FEC following my tax1 yesterday,
Egg - would they not put a PICC line in for you to save your veins.
best wishes to all. X
Hi Ebim
My consultant onc is very nice but the last few times I have seen clinical fellow or registrar. Neither of whom had any practical advice to offer. They are good at telling you about side effects of hair loss/neutropenia etc etc but the more “mundane” things (mundane to them not us!) they are not so good at. My BCN is junior and although very pleasant didn’t even know what the “red chemo book” was!! The most helpful have been the actual nurses on the chemo day unit when I’ve had my chemo done. To be honest ive found this forum the most useful!
Hi Egg
Having finished my 3rd Fec 2 1/2 weeks ago I still have hair, though it is very thin in places and i have a bit of a comb over look! I wore my wig on the school run today for the first time (it’s getting too warm for my little Bobby hat!) and also when I went into work today. Felt really self conscious but every one just commented on how great my hair looked!
I still have some hair on my legs (even shaved them the other day!) and under my armpits. I still have my eyebrows and lashes but I am bracing myself that these may well disappear after my first tax.
With regards to surgery, personally I have found it much easier than chemo. I was offered a skin saving mastectomy and was lucky enough to get on a trail for an implant and adht membrane so reconstruction was done at the same time. The result to me is amazing.
A low point for me was when my senital lymph nodes tested positive and so I was back in surgery again 4 weeks later to have all my lymph nodes removed but even then the surgery was fine and I recovered quite quickly.
I think you know what to expect with surgery, even though I had never had an operation before. But chemo is so unknown and hard to explain how it feels or how to prepare yourself that it is more daunting and harder to cope with.
Good luck to everyone having treatment this week . Mine is next Monday…first tax…already starting to get a bit anxious
Nicky xxx
Just scrolled back so I can comment on a few things.
Egg . Good luck for Monday. I think you have same problem with veins I have as my symptoms are same as yours. You may get given a picc line like me. I’m worried my chemo arm is never going to heal as it just doesn’t improve and the other arm can’t be used (no lymph nodes).
Good luck Suze with Tax1.
Ebim. I like steroids too! Its so great to have energy!
Wtp. You gave a very good account of EC. I can’t add anything to that (I had FEC but it sounds similar). Red wee. Oh yes.
Esther. Hope Monday went well. I had the same thing - something found in other breast while going through FEC. But like you it turned out to be ok. But at the time it really does feel like you can’t take any more doesn’t it?
Mooney. Any news yet?
I spoke to a volunteer from the Someone Like Me programme today. She was lovely. I thought I would share with you something she told me. She said that when you finish chemo and your body starts to regenerate you have the most amazing skin! She said it’s a secret because the docs don’t want cosmetic surgeons messing with chemo drugs. She said you look about twenty! So that’s something to look forward to.
Hope this week going well for all especially those having treatment.
R x
Happy weds everyone and good luck to those getting the pesky cells nuked!!
Egg - that sounds awful - can they give you a port or picc line to help? I have a port and after chemo it feels a bit bruised but then goes back to normal.
I lost all my hair pretty much on EC1 (even with cold cap) and have also lost nearly all my eyebrows after EC4 and eyelashes are most definitely moth-eaten now! Short and stumpy and the few long ones left hang down in the wrong direction. So hard to put mascara on without it getting all over my eyelids! Yet I still have hair on my legs - how unfair is that ? At least the armpit hair has gone (and down below! Something that never crossed my mind before!).
I have T1 tomorrow but no herceptin as HER2 negative.
Thanks to everyone sharing stories re surgery. I’m due after chemo and looking to be a radical mastectomy. I’d been so caught up with chemo that when I remember I still have that joy to come it hits hard so good to hear your positive stories.
Sending you all lots of good vibes - I think we’re all pretty darn awesome!! Xxx
I’m on the sofa, having had tax 4 yesterday, and just waiting for the side effects to kick in, probably this afternoon. Robin and Scotty, I hope you are coming around from yours by now? Esther, how are you managing yours? And good luck with tax 1 tomorrow Wtp. And Suze, for yours this week.
Thanks for the reports on eyelashes and brows everyone. It seems to be different for everyone so I think it’s like most things connected to this journey - it’s a wait and see what happens thing! I still have head hair as I have been cold capping and at the moment can still go places with my head uncovered as long as I’ve used my touch up powders and it’s not windy! I’m worried that EC will cause more to fall out when I switch to that in 3 weeks, but that’s obviously another wait and see thing!! Have you used the cold cap Nicky?
I don’t know what to suggest re your veins Egg - it is a worry. You could ask about a port and see how/if they try to reassure you or try to resolve your problem to avoid giving you one. I sometimes go in high with my negotiations, to let people know how serious I am about something and am not prepared to be fobbed off, though this journey has definitely made me less bolshy and more accepting of what’s to come. To reassure you though, I think tax is nothing compared to EC on the veins. Mine have been fine, no probs at all.
I have just received a lovely gift bag of goodies from a friend with a DVD, chocs, candle, creams…and posh biscuits in, so am going to have a coffee and some of those biscuits before the Tax side effects take my taste buds later! It would be rude not to!!! 
Oh dear Sue! I thought the skin thing sounded too good to be true! Thanks for asking Blue. My side effects are subsiding I think. Sore mouth and tiredness are the main things. I’m managing to work a bit but my work is only a couple of hours a day tutoring so not that hard. I find it’s a welcome distraction. My students are very polite and never comment on my strange headgear. R x
Thanks everyone for advice re veins. I’ll ask to see consultant at next appointment and see if I can get some advice out of him, rather than any of the junior drs. Right at the start my surgeon mentioned Piccs/Ports. She didn’t seem keen on either of them and said try to see if I can get through without… chemo nurse told me I could use legs for access if needed (ugggghhh - not terribly keen on that!)
Blue - as you say I think on NhS if you don’t ask you don’t get… your gift bag sounds lovely hope you are enjoying! (Eat the biscuits quick before your kids do!)
Hugs to all doing treatment this week!
Egg x