Hi All and especially Emily, so sorry to hear you are having such a rough time and don’t have many people around for support, as others have said hopefully soon you will feel a little better and try some of the charity support that’s available. BTW @pinklily my bcc is not very visible either and actually I don’t feel so comfortable calling her if I have a question, to be honest I feel a bit of a nuisance but my consultant and oncologist and the chemo nurses are super nice. I am sorry to hear you have not faired so well on cycle 2 and thanks for sharing as I was pretty ok and going for cycle 2 on Tuesday and expecting the same so it’s good to be prepared that I might not be, I have a foid recommendation, the day before my chemo I make a big batc of leek and potato soup it’s all I fancied last time so that’s my job for tomorrow!
Still got all my hair by the way which is a bit weird day 20 not even my body hair has moved ?♀️
Take good care of yourselves everyone ?
Hello All
I’m from the August thread - I’ve been reading that a few of you have concerns over the EC regime so I thought I’d share my experience with you.
I’ve just finished my sixth and final EC treatment and I’m now on day 5 of that final cycle. I found I haven’t suffered to badly at all and certainly nothing like what I was expecting. I have generally been nauseous for 4-5 days each cycle (but never actually sick) the meds have kept it at bay. I’ve had a bit of fatigue - usually for a few days after the nausea has cleared but nothing much beyond needing a bit of an afternoon nap. The worst bit for me has been a truly skanky mouth - especially on the 4th and 5th cycles - just a very stale taste that’s hard to shift. I’ve found that a few chunks of fresh pineapple help with this and the knowledge that it will fade kept me sane. I generally have also experienced taste buds changes - I mean fresh fruit tasting salty??? What is that all about??
All in all my SEs have generally been on the way out 7-10 days after my treatment and I’ve been able to have my normal life from day 10 to my next one. It did seem as though the intensity and duration of side effects increased with every round but to give you hope I’ve hardly had any nausea on this final round and as I lay typing this in bed at the start of day 5 I’d swear the stale mouth isn’t as bad as yesterday.
It is worth bearing in mind that everyone reacts differently - don’t let the stories you’ll read on here about hospital stays scare you - yes they do happen but the are not the norm and whilst most of us will have a bit of a rough time it is short-lived. I’ve gotten through it knowing it’s not permanent and it will go. My best piece of advice is to listen to your body and do what it wants - eat what it wants you to eat and rest when it’s tells you(it’s telling you for a reason). Ive told myself that the 3bags of salt & vinegar chipsticks are ok as a one off and the afternoons on the sofa are perfectly fine too.
I’ve also found puzzle books - wordsearch / arrow words have helped with the chemo brain too.
And lastly but by no means least - my hair started to come back after the 4th cycle - something I didn’t expect at all. It has shed a little bit on 5th and 6th cycles just after the treatment - but a fine covering of bum fluff is definitely evident all over my head.
Stay strong ladies - it’s not the nicest thing we are ever going to do but it is doable and you will get though it.
Sending you all hugs xxx
Hi ladies
Hope your all feeling a little better today
I have been well again completely knocked of my feet by round two and like others actually spoke about just giving it up
Not because I don’t want to have better statistics but because how hard EC seems to hit me
I am also tripple negative but I have had surgery so mine is now classed as a mop up so to say
I actually broke down at my husband yesterday and told him I just couldn’t do it, I said I want to see oncologist and discuss if there is anything they/we can do ,
Ladies as for the hair well so lost near on all mine , however I now have coverage over my whole head and it’s nearly white it’s so blonde ( eminim) is what I look like
Stay strong ladies
Also meet the genetics team on Wednesday so hopefully finally get that out of the way
hello ladies,
It makes me feel better this morning to know I am not the only one doing this. Day 5 after round two of chemo here, and feeling worse than round one, but still going.Sore everywhere, boob, armpit, back and neck, hips, upset tummy, the list goes on.Drinking lots and eating weird stuff ( currently have a thing for cheese scones with butter - why?!).Hair pretty sparse and I am getting used to going out in a hat.I can’t quite do the wig yet, and it has a really long fringe so I just look like The Adams Family Thing- it needs a trim! Anyway, keep sharing, keep going, and we will all get through it .Big hugs to all of you, especially those of you without friends or family nearby to help. xx
Hi ladies
In bed currently on day 4 after round two. Going to try to get up today, at least to the sofa! I’ve not had a great few days, but was “only” sick twice, although still very nauseous, whereas after round 1 I had spent the whole first night being sick. That said, I think I feel more “under the weather” than I did after round 1.
I have to admit that I’ve had passing thoughts on giving up chemo too. I keep trying to remind myself that it’ll be short term - it’s hard to deal with these months of feeling rubbish, but it’s for the best long term effect of getting rid of all the cancer cells. I’ve had surgery already but definitely want to squash anything that might still floating around in there!
Best wishes to all of you, and just remember that we are all going through this together xx
Anitmth, you’ve got me craving cheese scones now ? Last round for me I was craving anything with cooked tomatoes and/or mince ?♀️
Hello November Chemo Ladies… just wanted to pop in from the June chemo thread to say hi and wish you all well. You all sound like you bearing up and finding comfort from each other. Its a difficult path to tread and just reading your posts brings it all back to me, the hair loss, wondering what SEs you will be getting… its so scary and eveyone reacts differently. I had a masectomy in May then 3 x FEC and 3 X T (finished on 23 Sept) then had ANC and now about to start 15 x Radiotherapy on Thursday. Its a long haul but you just have to tick off each cycle as they come and you’ll soon get through it. On a hair perspective, I lost mine by day 12 of the first cycle but by the 2nd of the T part it was growing back and now I have a full coverage of white (eek) hair, getting thicker and actually sticking up in the morning. Keep chatting to each other and ringing nurses and hotlines whenever you need… take care all…
Kip
xx
Hello again ladies
It’s now day 13 since I had my second cycle of EC and I feel just like my old self again, although I get a bit tired in the afternoon. I do find going for a short walk helps, someone in one of the threads said, she had found it helped with chemo fatigue and having read up a bit more about this, I have to agree, even when I was feeling like rubbish up to day 9, I went for a very short walk with hubby, it also seems to help with the nausia. I’m grateful to say I’ve only gagged a few times, but the anti sickness tablets have been a blessing.
Katday, I know how you feel about giving up and I felt exactly the same and told my husband, I just can’t face 9 months of this. My husband said “you’ve never given up on anything in the 44 years we’ve been married and I’m not about to let you give up now, I want us to grow old together”.
Yes we feel like trash, tired, sick, aching and crying all the time and besides that, we have to face the injections in the stomach, just to start our white cells off again, so they can knock us back down. But when we feel better, we can feel more logical about it and realize what the alternative would be. Everyone should try to put up a fight and if that means having to deal with side affects for some months, we’ve just got to do it.
Last week I looked and felt like someone had white washed me, dragged me through a battle field and left me in the hedge. Today I got up early, sorted out the washing and ironing and I’ve been out shopping. A week on Wednesday I will have EC cycle 3 and feel like death again, but I will hold on to the fact that it will pass, maybe not for eight or ten days, but I will feel better, we just have to hold on and wait.
Even though I feel rough, I’ve taken up doing jigsaws, it really does help as a distraction, the brain consentrates on finding the pieces rather than how I feel, I can actually loose myself just for a short time, I also find it seems to help with the feeling sick all the time.
Hi Emily, I really feel for you as I felt exactly the same a week ago on Day 5-7 of my first EC. By Day 7 I was so desperate I got a friend to take me into my chemo unit (not going to say literally crawled in on my hands and knees but close enough) and asked what I could do. I was immediately sent in to the oncologist and she couldn’t have been lovelier, she got the pharmacist in and they gave me a Santa Claus bag of meds to get me through it - Domperidone up to 3 times a day and my personal wonderdrug Ondansetron twice a day which has worked wonders. I know everyone is being prescribed different things but the oncologist said her job is to find the best way to get me through this. Please try and get in touch with yours, or just beg to be seen by someone. Everyone in the dept was so lovely I just wanted to cry with relief. That was just last Weds and things have been much better since then. I actually started work today (have been set up to work from home) but I would have been totally incapable just 5 days ago.
Hi ladies
Lilac after reading your post , I called the ward and broke down explaining just how rough I have been and the lady was so wonderful has booked me to see oncologist before my next cycle and for the first time I just cried and she allowed me to do that, I have this deep implanted well I’m not sure what, that I can’t let my family or kids see me cry so I just smile and say it’s ok or will get better
This group is honestly amazing you just know that you ladies understand the fears the crap journey were taking and it makes you feel a little stronger knowing your not alone
Tomorrow I meet the genetics team so that will be another hurdle done x
Hope you’re all doing ok today. Emily, hugs to you especially and hope things have picked up for you and you’re getting more support. My Macmillan nurse has been brilliant so hope you can similar support through yours. Hang in on there, as I’m finding week 2 so different and fingers crossed you will too. The lethargy has lifted and I feel almost normal, but realise with each chemo cycle it will be tougher. Just need to take one day at a time … This group is brilliant for support. I didn’t feel well enough to post at first but just reading the posts lifts your spirits. Liloc, so glad your oncologist has helped adjust your meds. Mine has also said not to hesitate if the cocktail isn’t working then they can adjust. Fortunately mine seemed to work quite well last week to keep the nausea at bay.
I enjoyed trying on the different wigs yesterday but decided as my hair is holding on for now, I’ll go shorter next week and make a final decision on the wig then.
My mum makes a mean cheese scone so I have a freezer full, funny how we’re all craving similar things. Take care all. xxx
Hello All,
First time poster. A bit of background, I was diagnosed with BC in October and had my first chemo (EC) on 15 November (EC). My plan is 3 * EC and 3*Docetaxel.
I had a port fitted before my chemo as my veins are shockingly hard to find. It took several goes to find a vein to put the canula in to do bloods for the first time, and that was with someone holding my arm so tight I got pins and needles in my hand. So the port was a no-brainer for me. Although I have to say it feels very weird still.
I’ve been interested to read all you hair stories (espeically the lady garden ones). I used the cold cap and didn’t find it that cold at all, which I find slightly concerning. To date I’ve not had anything above my usual hair shred, although I’ve been freaking out a little everytime I’ve found a single hair on my brush.
My head has been itchy since the chemo and today it feels a little “burny” in places. Can’t really describe the sensation. I’m guessing this is the start of the big shred.
Interestingly the hair on my face is still growing (monobrow and moustache) albeit slower. I was really hoping that one benefit (sunny side up?) of the chemo would be not having to keep attending to the mono!
Other than that I’ve not had too many side effects this time, was very tired and hungry for the first 3 or 4 days but seem to pick up after that. Lots of headaches though but nothing the odd paracetamol has helped with. The racing heart freaked me out though, a quick check with my nurse and its a side effect of the steriods. Am trying to drink lots of water (have gone off tea completely) and am trying to get out and do some exercise every day.
Next round is booked in for 6 December can’t believe how fast it is coming round.
Hi Ckarabella
And welcome
I would say that is how my head felt before it started coming out, however have faith it maybe ok and only thin very slightly as you have cold capped, I didn’t as I absolutely don’t like being cold x
Hi Clarabella, your dates and treatment plan are very similar to mine (except I have the pleasure of 4 EC & 4 Taxol ?) so we can keep each other company. You do sound like you’ve coped better than me so far though as I’ve only been feeling human the last few days. Making the most of it til next Weds however when it all starts again for round 2. I too have a sort of tingly burny sensation in my scalp, haven’t noticed any more hair loss than my usual yet but judging from Kateday, juzcooper and others, don’t think it’ll be that long. Didn’t cold cap, no way was I going to sit in that chemo chair for any longer than the minimum - and suffer brain freeze to add to all my other traumas. So don’t regret that (ha,ha, refer me back to this post when I’m sobbing over my shorn locks). Got a surprise package in the post today from a friend, a tub of Queasy Drops ?(sour raspberry sweets) and a beautiful John Lewis silk pillowcase. So thoughtful of her, it feels so soft, so will be lovely for a tender scalp.
Had my port implant fitted on Friday, quite surreal experience doing the whole operating theatre business with local anaesthetic (discussing the merits of Hyde Park’s Winter Wonderland before I disappeared into La La Land) but prepared me a little for when I have to have surgery I guess (doing chemo first, then surgery, then rads). Thought I was really brave. ?. Worst part of the day was the taxi ride home from Chelsea when my husband was worried he was going to lose his Uber psssenger rating if I barfed in the BMW.
Hope those who have already done #2 are feeling a little stronger. Hang in there xx
Hi Clarabella,
Just thought I would drop in as I cold capped too, I had the same itching and burning after my first cycle and thought it hasn’t worked I am going to lose it but the sensations disappeared after about a week and so far the hair has stayed, just got back from cycle 2 so we’ll see how it holds up this time, i’ve Actually got to shave my legs soon I left them thinking it would go but not yet! So if you can maybe worth persevering with the cc. I’ve just hit the sofa and can feel the nausea beginning ?. Keep going troops we can do this together ?
Hi Clarabella
I too have a similar treatment plan to you, 3 EC + 3 Docetaxel although I also have herceptin from cycle 4 as HER2+. I’m 5 days post cycle 2 and also using the cold cap, it seems everyone’s experience of it appears to be different ! …I’ve lost quite a lot of hair on my head but strangely not from anywhere else?..Have decided to have it cut short tomorrow and see how it goes before starting cycle 3 in a couple of weeks.
take care everyone x
Hi Traceybev,
I’m Her 2+ too so we are on exactly the same i’m Er+ too so will have HT after the chemo and herceptin injections. How are you feeling 5 days on from your second session?
Take care
?
Hi Sals
Feeling better this evening, the second session went much the same as the first, seem to tolerate the chemo and nausea ok but it’s when I start the injections 2 days later that’s when I start to feel really rough !! ?
Good morning ladies
I hope your all bearing up well
Finally starting to feel human again after number two , of too genetics today aswell
Have the old injectaches today my new name for them
Had a melt down at end of last week and did call the nurse in Monday and it really helped she booked me to see oncologist before next cycle to talk about arm pain from the veins having a little protest x
Hello lovely ladies, this is my first post but I feel as if I know you all as I’ve been lurking for absolute ages, gleaning info and comfort from your posts, so thank you for that.
I’ve already had a WLE and started chemo (3 FEC and then 3T) on 15th November. Had a week of absolutely horrific (to me) night sweats and feeling spaced out, unable to sleep etc, which I can see appears to be a pattern. I’m very thankful the anti sickness goody bag I was given worked like a charm and although in week two post chemo I’ve had a couple of watery mouth moments, I’ve not actually been sick. I can concur with the taste changes, my usual cup of tea was vile and I had to resort to tropical cordial and chicory coffee instead.
Not looking forward to doing it all again on 6th December, especially as I expect I will be bald by then. Tried the cold cap but it was too tight and the cold on my forehead brought on a migraine so it was whipped off pretty sharpish!
Welcome Holeinone! I too, like you didn’t post for a little while but found the posts from everyone so helpful and comforting especially in week 1 after chemo when my chemo brain kicked in and I felt too spaced to type much that made sense.
I’m just a day after you for my EC so my next is 7th Dec. Will be thinking of you on the 6th. I’m having my PICC line fitted that day.
My hair hasn’t budged yet but have decided to cut it short next week anyway and get the wig (so hard to choose, had no idea there would be so much choice of style, colour etc.)
I’m hoping like you that the anti-sickness drug mix works well next time too. Trying to get some Christmas shopping done and going into cleaning overdrive before end of next week. The kids are already pestering about getting a tree. Will be something nice to look forward to after chemo 2.