I went for my blood test today - they do them in the chemo unit where I am being treated. The weather was warm and I was wearing sandals and a dress, anyway they asked how long my ankles had been swollen! I had a look and sure enough they are huge, I had not noticed this before. Apparently it is a very common side effect of of docetaxel (tax) and they don't give you anything unless it is bothers you (it doesn't) because your kidneys are working hard with the chemo and they do not want to burden them further with diuretics.
Hope you guys are doing OK. ...
Well my hair has finally secumbed to the chemo, hubby shaved it on Friday night as my scalp was so sore and hair coming out in clumps, I have bald patches all over and the small hairs coming out everywhere. I am wearing hats and scarfs and really enjoying trying new styles which I have found on youtube. I actually feel quite liberated which I never thought I would feel being hairless.
2nd FECT tomorrow so hope SE are minimal will deffinately talk to them tomorrow about constipation which I have to say was horrific but eating lots of bran, prunes and having laxado and drinking plenty of water as advised here.
Hugs and love to you all. Xx
Hi, regarding sickness after first Fec, i was very sick and nauseous first one- told Onc before chemo number two and he prescribed Emend, it really worked, its very expensive, generally not given at first chemo until the team know you need it! I think its about £400 for 3 days worth! It was a massive improvement for me and i wasnt sick at all.
You might find that just dabbing the corsodyl on the sore area with a clean finger or cotton bud is helpful if you are concerned about staining your teeth.
just a thought, Moijanxx
ps. Im sure the team wont mind you contacting them if you later feel you need help with this.xx
Thanks for the tips everyone. I've got corsodyl without alcohol and will try some of the other ideas. I don't think it's bad enough to trouble the team yet, just irritating.
I have got some Biotene gel which helps with a dry mouth. Do not confuse with the toothpaste or mouthwash made by the same people. This is a clear gel which is a saliva replacement:
Hi See See, just to mention that recently, I had a sore mouth on my current chemo, and instead of brushing four times a day, I rinsed my mouth after every food/drink intake, with common cooking, bicarbonate of soda, 1 teasp to a large mugful you can gargle with it, but best not to swallow. I of course still brush my teeth morning and evening with a soft brush.
Anyway, it really worked for me..quite quickly. DIluted corsodyl was what my onc advised but it stains the teeth! I do dab it on to cold sores if i get them tho and that works for me.
Hi See See
In addition to what Sue said, you might want to contact your chemo team about your mouth. I was told to avoid mouthwash with alcohol in it, although I know many ladies have been prescribed Difflam, Corsydl mouthwash. It depends what the problem is really. After my first cycle I had a sore tongue and some mouth ulcers, I got Gelclair sachets to help with this. After second cycle I had oral thrush and I got Nystatin drops to help with this.
Hi See See
The Preparation for Chemo thread suggests
Has as anyone got any tips for dry / sore mouth except brushing teeth after each meal and corsodyl four times a day?
I was very sick on my first Fec and admitted to hospital for a few days to get it under control.
So will be having a meeting before the second round as to what meds to try next time. What did you feel helped you the most with nausea this time?
The first time I got Ondacetron as liquid just before the chemo drugs went in, then 6 in tablet form.This continued on cycle 2.
For the regular pills I got Metaclopramide, which is what I think didn't do anything.
After a week, when I went to flush my PICC, they changed those to Cyclizine, which I took for another week, and now I'm taking again.
Maybe the key change was taking Emend: it's a 3-day cycle, with a stronger dose just before the chemo, and then 1 pill on days 2 and 3.
I still feel nauseous, but I haven't vomited once, and I'm able to eat and drink more or less ok.
Good luck for yours!
Vintage I am taking these:
My sister-in-law had them when she was on chemo (she did not have breast cancer - she had Non Hodkinson's Lymphoma) and her mouth was dreadful so they gave them to her. I bought them myself and so far I have not had a sore mouth.
I intend to take them for 5 days starting the evening of chemo and the following 4 days. That way the pack should see me through.
You are supposed to suck one last thing at night after you have brushed your teeth and use bottled water because of the chlorine in tap water, that way the good stuff in in contact with your mouth, tongue, gums and throat for several hours undisturbed.
Of course I have no idea if my mouth would have been OK anyway but for £20 I was not taking chances!
Well Day 14, and that was a bit of a hairy week, I caught a cough last weekend, no idea where from, hadnt left the house, , had high temperature, went into hospital, all the usual tests done, but luckily didnt need to stay was put on antibiotics, can only take paracetamol, and throat lozengers which is good, but the cold errupted, felt like death, me and my bed became joined at the hip, but over the past two days I am starting to feel human again, then wham dam itchy head and hair failing out like a moulting dog, I have my fingers crossed it doesnt all come out, (does it with everyone) ???? I have it cut short and spikey so hopefully it will go gracefully. Other than that I feel OK, bit knackered, sleep pattern all over the shop but out of the past 7 days slept for 5 hours solid on one of them ! so all is not lost. Deb x
Hi all, day 3 after the second treatment, and the nausea/vomiting effects after the medication change are like night from day!!!
Just some constant nausea, but no vomiting at all, and able to move around instead of spending all day in bed sleeping on and off. It is such a relief for the next ones...
I'm also able to drink and eat, so I bet that helps too.
As for the hair, it started falling early last week, and I didn't imagine we have so much hair hehe Lots have fallen but not very noticeable in the mirror yet.
And yes, I also have the "head very sensitive" effect: I've got a pixie cut, and even a soft wind blowing makes parts of my head hurt, hehe
Of course, I wanted the legs to go first, but that's not happening 😉
I'm on day 4 of my first cycle. Apart from a headache, which I'm prone to anyway, and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn's disease.
I post this to give hope for anyone about to start that it can be OK, at least initially.
I'm on day 4 of my first cycle. Apart from a headache (which I'm prone to anyway), and a kind of fuzzy feeling occasionally, a metal taste in the mouth and some tiny red spots, I seem to be suffering few ill effects. The constipation is a bonus as it just cuts down on my diarrhoea as a result of previous surgery and Crohn's disease.
I post this to give hope for anyone about to start that it can be OK, at least initially.
It was two weeks as yesterday when I had my first chemotherapy session and over the last few days I have noticed my hair falling out however today it's coming out in clumps and I mean clumps..actually had little melt down this morning and my head is actually tender to the touch as though I have had my hair tied up tightly in a ponytail. I am quite bald in the front of my head and where my parting is so today I decided to use my little hat and brightened it up with a scarf around it. It felt very strange at first but to be honest it wasn't as bad as I thought it would be for me. I over the last two weeks like many ladies here i decided to take control and had it cut into a bob from very long thick hair and then Tuesday I had a little pixie cut and I am so glad I did as if it had been my long hair I think It would have been so much worse for me. My other half is shaving it for me later as it looks like I have a mullet... not a good look for me. 😨
Hugs to you all...xx
I had my first FEC yesterday and opted for the cold cap as I've recently grown my hair and it's really thick so a bit of thinning will help my confidence rather than losing it all. Everyone has told me how good it looks.
Yesterday I was really scared of the drugs and the whole process really and cried intermittently for the first half hour but things got better and there were people around to chat to.
I'm feeling ok today if a little tired. I have Crohn's disease so the limited diarrhoea is quite a bonus though it does cause more stomach pain.
Injections start tomorrow but the sleeplessness is already upon me.
I'm hoping that after my mastectomy and reconstruction followed by two further hospital admissions for an infection which included further surgery on both scars, that my bad luck is over, but reading the thread suggests that I may start feeling rough In the next few days.
Julie I am taking claritin too because of this:
You don't need a prescription and the cheapest place I have found it is here:
Awww thank you, are you finding it helps you? It came as a shock to me as I had been feeling OK then wham! Hopefully I will be prepared next time. Thank you for your help.
I'm not sure if this will be any help to you but I found an old medical paper on pain and chemo a while back and the suggestion then was to use an anti-histamine. Some people are using Claritine with the GCSF injections for that reason. I'm using Claritine plus the occassional benedryl plus an anti-inflammatory
Here's an article on the topic. Sadly, like many of the issues around side effects we need more research to prove or disprove this idea
Thanks all for the heartburn advise i will ask on thursday for something stronger , i too am feeling normal this week all ready for round 2 lol xx keep well
12 days post chemo and for the last couple of days I feel as though I am back to my normal self just about. Suffered terribly with constipation the first few days and then aches and pains in my bones for a day or two. I am also taking laxido and finding that it really helps just wish I had had it before the horrific experience...not nice!
I am also using Belle's tips for constipation so lots of prunes through the day and all bran for breakfast as well as lots and lots of water and fruit
The injection I had to self inject are GCSF bone marrow and white cell I believe, sat I had awful pains in my lower back and groin which impacted on my mobility I found out after calling the bleep number that this is a side effect. My next chemo is 1st Sept and feel I am even more prepared now having experienced one session and all gaining all your tips and support but saying that every day has been different and I'm sure next session will be too.
I hope you are doing well and I am sending you lots and lots of (((hugs))).
Tracey, I asked for help with heartburn because Gaviscon did not help me and they have given me omeprazole.
I am feeling back to normal now and had a glass of wine last night.
Hi all , great to read everyones experiences really helps i have my 2nd fec on thursday but can anyone advise what they have been taking for heartburn ? its not something i have had so severely before , thanks xx
Hi Maggie Dot,
Welcome to the forum - trust me the anticipation is far far worse that having your first chemo. I am on the same cocktail as seaview namely TCH but I am getting 6 lots not 4. Well having said that, if I find it all too difficult they will let me stop at 4 - I didn't know that but that is what the oncologist said when I last saw him.
Be prepared for insomnia, heartburn and fatigue but while it is not something to embrace it is not nearly as bad as I feared. I think most of us find that.
I have a PICC line, ( a semi permanent drip feed tube) no idea why but they offered it and I said yes. So glad I did because I have none of the issues the girls talk about re veins.
I also used the cold cap and if you are trying it take some pain relief a hour or so before your appointment.
Let us know how you get on xxx
Hi Maggie Dot,
have just popped across from the May thread and read your post.
And it is very understandable that you are scared about so many things. I was, too.
Yes, I have lost my hair, my eyelashes and most of my brows - I am on 6 x FEC. However, knowing this would happen on my regime - I worked out how to deal with it, before I started. it has made a difference - I chose not to cold cap - as there was no guarantee that one can retain ones hair. But I do look very stylish in the way I tie my headscarves and by now I even go without. Make up has become very important - it really helps and one would not know....I have, as yet, not come across anyone, who thought I was on chemo!
Work - You may wish to have a discussion with your employer as you will now fall under the Equality Act 2010, which has replaced the Disability Discrimination act from 1995.
This link may be of help
I have been able to work through chemo treatment 1+2 with minor adjustments, however post treatment 3 I needed to take the week following treatment off, as the cumulative effect, especially of fatigue, became worse. But I am still working the rest of the time. I am now just post chemo 5 and am heading back to work on Monday. Having learned about the 'recovery cycle' post treatment I requested for my treatments to be on a Thursday early afternoon. No problems on the Friday, as on steroids and then no work for 9 days. This perfectly covers the anticipated 10 day 'recovery'. So this may be something for you to consider. Much, however will also depend on what kind of work you do. Working with children and in very close proximity with other people, may not be a good idea - and I would suggest to discuss this with your oncologist as to feasability. The reason is that our immune system will become compromised and we can easlily pick up infections, which we are not able to fight easily.
Your mind will be fine, lol - apart from the famous chemo brain - it usually is not too much of a challenge - I get away with having a 'blond' moment. Forgetting a specific word or going somewhere and not remembering what I was going to do there - are things we can get away with for a short while.
If you eat healthily and ensure you walk or excercise a little - should ensure you keep your body shape.
And, if you do put weight on - often it may be fluid retention which is easily fixable, once all is done.
This link may help you to understand more about AC chemotherapy -
And here are links to help you with chemo preparation, etc.
Long post - lots of info. Hope it helps a little.
Hello Everyone. I'm just posting because I've got this overwhelming fear and I haven't even started chemo yet. I just need to write it and get it out of my head and on the screen.
The Diagnosis, lumpectomy and positive lymph node diagnosis were all ok for me to deal with but I am about to start chemo on Monday and for the last two weeks I've been just on edge and eating a lot of chocolate which prob doesn't help.
Chemo totally and absolutely terrifies me and reading everyone's experiences helps so much to normalise things. I'll post my experience as I go through too in the hope that it does the same for someone else. I'm scared of losing my mind, my hair, my body shape, my job, my oh my oh my.... I will have to see if any of that happens....
I was going to start FEC but I did the trial and I'm less high risk so
I will be having AC. Is that something anyone else is having?
I wish everyone well and lots of love xxx
Just back from getting my first dose of Herceptin. I had an injection which surprised me because I have a picc line. Anyway all uneventful apart from having to stay there practically all day for observation but had no adverse reactions.
Debs things will improve, please don't give up. You might feel miserable now but you will will feel better within a few days xxx
Hi Deb,just read your post and it reminded me of my first FEC in May and how hard it was.On the day after my infusion I felt fine so didn't bother taking any meds,but days 4&5 felt I'd been hit by a bus and I was very down and weepy but but towards day 7 started to pick up.The 2nd FEC was hard but you know what to expect so I knew to write off the first week after chemo .I also remember phoning the BCN crying that I couldn't do this anymore so she made me an appt with the oncologist,who reduced my 3rd FEC by 10% and this made it easier. I am now on weekly taxol for 9 weeks which is a lot more tolerable...I've just done no 4 so the end is in sight .It is hard but if there are problems please speak to your BCN/oncologist as there are things they can do /please don't suffer...X
Hi everyone, I am now on day 5 after 1st chemo, yesterday was my worse as sick meds finished and felt so bad achey and then weepy etc etc, but then read through my med sheet and it said I could take one of them as and when, yeh, but I still had a terrible sleepless night, so hoping for better tonight, had one of them tired nothing days today feeling just a bit wiped out, everything is just too much effort, Am having so many negative thoughts, shall I throw in the towel, as having chemo is my choice as as my lumpectomy and lympth are clear, but my oncotype dx test puts me intermediate risk for recurrence, it is something I will have to give thought to, but I am hoping I will be able to percervere ! Deb
Hello girls - so it is Wednesday and day 6 post my 1st chemo and I feel like me again! Hooray. My worst day was without doubt the Sunday after - so day 3 and 4 are my delicate days.
Anyone on tax (docetaxel) or self administered G-CSF really ought to be taking claritin as well - see here:
Just google if you want more info but they more or less give it to everyone in the USA, nobody seems to know why it works but it does!
The following might be a bit too much information so take this warning and do not read if you don't want to know. Last night I had slight burning to my perinium - nothing dreadful and I have washed it and patted it dry then applied sudofed cream. I had some old stuff in the bathroom cabinet from when the grandchildren were in nappies and this seems to have sorted it out.
Where do I start!..thank you for all the tips on constipation oh my goodness I never want to experience the severe pain and torture again, I truly believe I am scarred by this constipation ordeal.. although I now have all bran for breakfast followed by prunes and prunes all the way.. (Thank you Belle) I contacted the hospital and I was given laxido. Feeling sore but so much better if you know what I mean. Last night I felt absolutely great getting over the above ordeal and then this morning I couldn't move a muscle my actual skin on my bones hurt to the touch not sure if it has anything to do with the injections I have to give myself but one positive I slept like a baby. Feeling better as the day goes on but just so tired.
My hugs and thoughts are with every one of you going through this ordeal..we are walking through this together helping each other with every step... thank you for being there!
I would like to share an idea I am doing with my 5 year old daughter. It may/may not work with others but thought I would share it.
We have a post it calendar, 12 sessions, 6 cycles in my case. For each big cycle completed we rip the post it up and my daughter has a big chocolate bar. On the smaller one , we still rip the post it up as feels you are getting through them and this time has a small chocolate.
She says it is a bigger count down to Christmas!
Thought I would share, may work or not for people. It is hard work for her as well she feels she is helping and part of the journey as well.