I can't promise that it will get better but it will get easier to deal with - having had two rounds of six - second time around is a little different - I have been fatigued which I didn't have with round one but then took a couple of paracetemol and went christmas shopping for 3 hours yesterday!!
Be gentle with yourself and go with the flow - and do what your body needs or wants. So today is a bad day - nurture yourself - and as you say onwards and upwards!!
I didn't have mouth ulcer problems but some latent issues caused my gingivitis to flare up badly. My dentist recommended Corsodyl toothpaste and this completely sorted everything out for my 2nd cycle of FEC.
l had used the aloe Vera toothpaste recommended on this site, which worked very well and is very gentle. However, if you do normally have inflamed gums it is worth checking out the Corsodyl toothpaste. It is available in supermarkets and chemists.
Good luck everyone!
Hi Sue H-S, Sarah73 and all you other ladies
Well, I had my Chemo on Monday and definitely not as bad as I thought it would be – even though I’d read others saying this, a little part of me didn’t believe it. It was all given by IV direct into a vein – I’ll see how that works out for the second one. My Onco likes to do less invasive treatments, but has said if I want the line put in I can have it.
It’s all done and dusted now and even though I didn’t stroll out that room like a boss – I gave a sassy little strut and that was good enough for me!
I was in at 10.30 and had a Heart Ultrasound which was okay – then treatment started about 12.30pm ish – had lunch about 1.30pm and then I was observed for a couple of hours and sent home about 3.30pm.
I felt as if I’d a really bad hangover at the back of my head, and a bit heavy headed – other than that, no other side effects. Was in bed for 10.00pm – after dozing on sofa for an hour beforehand lol!!! Had a great sleep and didn’t really stir during the night.
Day 2 was very uneventful – took anti sickness meds I was told to take, but omitted one that I was told to take only if I felt sick, 15 mins after starting breakfast I felt sick and took the other med (Domperidone) which soon sorted that out. Just chilled about the house taking things easy to see how it went. Managed to go up to work at 7.00pm (we have a warehouse) and did a couple of hours stacking shelves and reorganising, so really pleased with myself.
Day 3 (today) woke up to a banging headache! Woke up at 3.30am and didn’t get back to sleep so just got up and tidied up. Took anti sickness meds and 2 paracetamol at 8.00am. Headaches have been here for most of the day. Went into work from 9.30 – 1.00pm and then went wig shopping!!!
Feeling very positive so far – God knows what tomorrow will bring, but I’ m so glad that the first one is over and done with – 1 down 5 to go!!!!
Sue H-S, I’m taking on board what you say about FEC, I’ll see what happens in my 2nd cycle and might ask for a line then. I was only given 3 days steroids because I’m T2 Diabetic and it raises your sugar levels.
Jojo45 – My hygienist prescribed toothpaste for me, gave me a soft toothbrush and some interdental brushes, all on NHS. Here’s the link for the toothpaste http://www.colgateprofessional.co.uk/products/colgate-duraphat-5000ppm-fluoride-toothpaste/faqs
Good luck all you lovely ladies! xxx
I'm due to start chemo next week 😳 Having FEC-T regime, six treatments over 18 weeks.
Had my echo today and apparently I do have a heart which is a good thing as now good to go.
The only thing I'm slightly concerned over is the PICC line, as I have had lymph nodes taken from the affected side this has to go in my good arm (left) Does this affect my movement of this arm as limited mobility in the right arm still?
The treatmnt itself I think I'm ok with, I expect to feel sick and tired but bring on the fight 💪🏻.
Is the cold cap worth trying? I'm ok with loosing the hair I think. I'm off wig hunting 👩🏼on Friday and at least it's winter coming so a good excuse to cover up with hats. A friend of mine said her sister stuck some of her own hair onto her favourite hat with surgical tape, might try this even if it only lasts a couple of weeks 😀.
Feeling positive but also slightly apprehensive 😩 at the same time.
Hi Sue. Thanks. I am being treated privately (my husband gets free private healthcare with his employee benefits package!) which may be the reason I don't have a red card, just a Nuffield book. It's also the reason I'm getting the pertuzumzab in this way too as I don't believe it's available on the nhs at the mo. I only had it over 3 days the first time to make sure I wasn't allergic to any of it. Next time it'll all be done in one.
Your chemo regime seems to be a little different to most of the ladies on the forum, hence side effects may be quite different - especially as you appear to have the chemo administered over a number of days, rather than in one session every 21 days.
Our temperature, whilst on chemo can be up and down - my lowest was 35.6 - Many of you may also experience hot flushes, heavy sweats and night sweats as you move through your treatment. This should improve dramatically, once your chemo regime is over.
Chemo card - you should have been given a red card with your patient number, name and date of borth on it - which has the hospital number the chemo nurses number and the chemo helpline number on it. It also tells you when to ring, when specific things happen.
If you are being treated by the NHS you should really have one - if being treated privately - I am not sure about their protocols. It should look something like this -
Hope that helps
I am amazed that you are at work! - The breathlessness is quite normal and is likely to get worse as you move through your chemo cycles. You ability to stay alert may also be affected.
It may be wise to consider taking the 5-7 days post taking your last steroid tablet off work.
I had my chemo treatments on Thursday afternoons, so I could work on the Friday, as on steroids.
Then I took off the following Monday to Friday and went back to work on day 11 post chemo treatment right up to the next cycle. Having the weekends gave me a total of 9 days to recover. I also had the G csf injections.
The breathlessness may be due to a number of things, however usually is happens, because our red blood cell count falls. Red blood cells transport oxygen to our muscles and our brain to keep us active and moving. So with less oxygen getting to the muscles as we move them, we try and breath more to get more oxygen - hence breathless - and less oxygen for the brain - hence challenges trying to stay alert.
Skye - good luck today - Your worries are understandable - it is the fear of the unknown, especially as we all react differently to the treatments we are being given - and adminstration seems to vary from chemo unit to chemo unit,too. The most important thing I can suggest at this time is to drink as much water as you can and keep the arm, where the cannula will be put in (arm oposite to operation side) as warm as you can.
This will help with plumping up your veins and the cannula insertion will be easier, as will be the adminstration of the chemo.
In general terms - if you are having FEC or EC all the way through I would really suggest to have a PICC line installed, as the E in the treatment can 'burn out ' your veins. There are other types of 'permanent' ports, such as a Hickman line or a Portacath. The PICC line seems to be the most commonly used.
Again - for general reference, it may vary from case to case - generally you are being given saline solution and IV steroids followed by your specific chemo regime. The IV steroid can, in some cases cause prickling and heat in the nether regions, but it is not too unpleasant and does not last long. You are highly likley going to feel fine, when all is done, thanks t othe steroids. Some have a fuzzy head, a bit like a heavy hangover, especially when on FEC or EC. For me that lasted for about a day. The steroids tablets, you may be given to take for another few days, will help to keep you well. Steroids are basicially administered for the body not to reject the chemo. Once you stop taking them you may feel more tired, so be aware of that. You should also be given a bag of other medications, such as anti sicknes, etc and the signed form for you to apply for prescription charge exemption.
Keep drinking about 2 litres of fluid a day to flush out the chemo and to protect your kidneys and urinary tract.
If you are constipated for more than 2 days - please do not wait for it to improve - but start to take Senna tablets.
Fingers crossed for all of you.
Hi skye, good luck for today hun. its all the unknown that get us worried. for me the treatment was quick and straight forward. i'm on morning of day 4 now and have felt too bad apart from occasional icky tummy, keep up all with the nausea meds they give you. i have my first injection last night, was a bit of a wuss and got my nurse friends to do it for me. youll be fine hun, stay strong. lots of hugs xx
I have first session of Chemo tomorrow at 10.30am. Feeling very anxious and trying to calm myself down by reading all your comments. I'm struggling to understand why I'm so panicked.
Dont think I'll get a wink of sleep tonight! Kelly and Sarah - if you've got any more updates I'd be grateful to hear from you both on how you're feeling now.
Big hugs to to those who've managed the first cycle - we are all so brave fighting this battle against this horrible disease.
Love, kisses and mammy hugs to everyone. xxx
Hi Kelly. Thanks for replying. I did the injection myself tonight without thinking too much about it. What was involved having portacath fitted? I have been OK today. tiredness on and off. doing too much in between. got quite breathless at times. my body telling me to slow down I think. planning on going to work tomorrow so will see how I feel in morning xx
for those of you, who would like to use Private Messaging - perhaps to support each other with some things, which are easier to chat about 'off forum' or to exchange details of a more personally identifying nature - this links should help you knowing of how to set up private messaging. This is of course, for those, who have, as yet, not discovered the feature.
Please always remember - this forum is in the public domain, so we should not share details, which could identify us or others in 'real life' - i.e. e-mail addresses, Facebook names, full names, doctors names, etc.
Some people make up a chemo caddy, others don't. Not all of the bits, which are on the link are needed for everyone, as it is a collection of information of many ladies, who have gone through chemo.
Absolute mouth hygiene is vital, a soft bristle toothbrush and alcohol free mouthwash. I would also suggest to have some Senna and imodium on stand by - so you have something in case one or the other happens and you don't have to go out to get it. Small easy snacks - ginger biscuits, water biscuits, etc will be helpful to keep nausea at bay - and of course water, water, water. Always carry some with you.
Here is the link - you need to scroll to the bottom of the page to find the post -
Thinking of you re the 'shave' - you might just surprise yourself...
Hi Sue H-S
Can you tell me where the information is on the Chemo Caddy that should keep all our bits n pieces together.
Im hoping to stock mine before Monday.
Went and ttried wigs on today - ended up in tears when they put the wee cap on. I always thought Id be okay, but ended up blubbering. Think I'll have to face away from the mirror when I get my head shaved. Will also use headphones and listen to music. I feel like a wimp!! 😩😩😩😩
Love n kisses
Hi Kelly, not sure what time your appointment is, but I have my fingers and toes all crossed that it goes well.
Like you I'm not looking forward to any of it but the sooner it starts the sooner it finishes. They do say it is the best way to go especially if you are of a nervous disposition or in my case paranoid. You have to keep telling yourself, you can do this and you are not alone.
and welcome all new November starters! - Also to those who are very late October starters - you might feel better off on this thread, as many of the October thread may be so far ahead of you in their treatment cycle.
Digital thermometer - Boots does a lowish cost option one, which I used. I think it was around £6.00.
And do have your red chemo card with you at all times.
Please use the chemo helpline number should you experience any symptoms, which are new to you. Waiting until they go away again, perhaps with usual home remedies, might not be the right choice. It is always better to check it out and get their advice, before things get any worse.
It may also be an idea to put a call into your GP to make sure he/she knows that you are going through chemo. As they are GPs and not specialists, you may sometimes know more about your condition and what you may need, than them. Having that conversation may save you time, when needing prescriptions, etc - when you need to call them for assistance.
You should be given a form, signed by the chemo nurse - to apply for prescription charge exemption, which will be granted. It will exempt you for a few years - so do it even if you have a pre-paid card.
Should they not give it to you, please ask for it.
Also, should you have to attend A&E - please show the card to the receptionist and let them know you are on chemo and immuno compromised. They will usher you into a separate waiting area - as waiting with all others is not a wise thing to do. Your system will, over the treatment cycles - become more and more immuno compromised.
It is likely that you will feel fine the first few days post your treatment, as you may be on steroids. Once you come off them, you may feel more tired and possible side effects may become more apparent.
If you are being physically sick for more than one day and your medication, that you will be given does not help - call the chemo helpline, as they can adjust your medication.
Should you experience constipation for more than 2 days - it may be a good idea to take some Senna tablets. Do not let it get any worse.
Phew - so many tips to share - hope they will be of help to you.
Good luck to you - hoping all goes well.
They give you a chemo card - it is red and gets you seen quickly if you need to go to A&E or need a blood test. It will have the details of your chemo on it and any emergency numbers your might need.
You have to get your own thermometer and they like you to have a digital one that does your ear.
Hi Kelly, Snowydog and Blueash
Im starting Chemo on Monday, but I've sneaked on to this thread!!!😜😜😜
Whoever is first with their treatment can give us all a heads up of what to expect. I'm sure the iunknown is more daunting than the treatment.
Good luck everyone - we will do this!!
Ok so I am one of those "lucky" people to be starting Chemo in November, 3rd actually. I have to have a portacath inserted on Tuesday, 1st as I have been told I have rubbish veins. Do the hospital issue a thermometer and a chemo card? I haven't seen the chemo nurse yet, I am booked for the guided tour on Friday.
Hopefully I am not the only November starter, don't want to feel alone.
I cannot believe that we have a November thread already! I am from the August starters and want to welcome everyone.
Chemo is not as bad as you think it is going to be - lots of us have been where you are now and have come through it.
You will feel at rough at times but only for a few days and things are so much easier if you have medicine on hand for heartburn and constipation. Buy non alcoholic mouthwash and get claritin hayfever tablets in because:
What you cannot face now will be easy in a few weeks - my worst fear was giving myself injections! After the first couple I wondered what all the fuss was about.
If you have any worries or fears or just want help/support/advice we are all here to help you. You will get through this xxx.
Hi to Everyone who's just about to join this thread!! 😀😀😀
Im booked in for 1st round of Chemo on 31/10 - been told that I've to have 3 x FEX, 3 D-H.
Can't wait to get started, but nervous as well. 😳😳
Apparently, drinking lots n lots of water (no tea or coffee) beforehand will help. Worth a try I say.
Looking forward to hearing everyone else's e periwnce snd sharing info so that we all benefit.
Good luck to to us all - mammy cuddles available at short notice xxx😘😘😘
And here is the November 2016 chemotherapy starters thread! Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave.
Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime.
Here are some helpful links for you to prepare and support you.
Chemo preparation -
If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you -
And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for -