I thought it would be a good idea to start this thread, as there isn’t one up yet and it is now the 20th of June. Some of you will by now know, that you are likely to start your Chemo journey through July.
I myself will have had my third FEC by the 1st of July.
You might find this thread of great help, as you start to prepare
Hi Bella Boo, I have my pre-chemo assessment Friday too. How have they decided to fit a PICC line? I’m not sure if I’d just prefer to have one from the start as I’m paranoid about them using my “at risk” arm for the chemo. But by bcn said they only do it if they struggle to get access. I’ve had WLE and ANC with 4 positive nodes. Am also having 3 FEC and 3 T. Think I’m as ready as I can be at this stage. Had my hair cut short, have bought my wig and got a selection of hats at the ready. Making my way through the hints and tips to make sure I haven’t missed anything really useful!! How about you. Are you feeling ready to get started?xx
I’m not cold capping either. Didn’t fancy the cold or the added time being there. Plus I don’t think I could cope with the stress every time of wondering how much more hair will fall out. I’d rather just accept it’s going and once it’s gone it’s one less thing to worry about. Will probably not feel like that at all once it starts falling out, but at the moment I’m really sure of my decision. I find it so strange that I feel so well and know that it is only the treatment to make me better that is going to make me ill. Before diagnosis I was feeling the best I had for a long time after a difficult pregnancy and birth. Then was back to trying to recover from surgery and now feel the same as you that just as I’m feeling good again I’ll be hit with chemo side effects!!xx
great to see you here already. This is a very long post, sorry - but I hope it is of help to you.
The information has come from a long thread and might be helpful as you are approaching your treatment. I hope the originator of it won’t mind me reposting it, I have updated it, too.
This is a compilation of most top tips for going through chemo! A big huge thanks to all the contributors who have added their tips over time.
For the Gums:
Ensure you see your dentist before commencement of treatment to get everything sorted, including Hygienist. It will ensure your mouth is in a healthy state and may help to reduce some side effects.
Bonjela
Corsodyl daily for x 3 and Corsodyl normal for 1 (dentist recommended), mouthwash should not contain alcohol
ultra soft bristle brush/baby toothpaste
Aloe Vera based toothpaste, Beverley Hills gum strengthening toothpaste
For the mouth:
Gelclair, salt water wash, Oraldene, tonic water, Difflam mouthwash
Aloe dent lip balm with lysine (good for cold sores also),Nivea Lip butter – try to ensure the lip balm is paraben free, especially if you have a hormone receptor positive diagnosis.
Banana for early morning with the anti-sickness tablet
Flavoured/green tea if can’t face milk or dairy products in tea (dairy – if you can go organic should you have hormone receptive diagnosis)
Light bites suggestions
cream cheese and bread sticks
Nothing spicy
Flat lemonade
Plain biscuits
Banana/peanut butter sandwiches
Travel bands/anti sickness bands (Poundland cheaper than Boots)
General Wellbeing/During Chemo:
Carry your card and thermometer with you all the time and keep bag packed
Get a medical alert bracelet or neckless if you had a sentinel node biopsy or node clearance stating no BP/IV (either RT arm or LT arm depending on which side the procedure was done) Lymphedema Risk
Chemo Caddy – see below
Pin up emergency numbers where everyone can see them – who to contact and when
Check with your consultant who to phone at evenings and weekends
Store emergency numbers in your phone
Digital thermometer if not given one by hospital (Poundland cheaper than Boots)
take temperature under armpit as more accurate
Drink LOTS of fluid before and after chemo - Lucozade for energy - Light meal before chemo
If having CMF and nose issues when Chemo being administered then sweets or lolly , ice lolly to suck during (small cool bag also recommended to keep lollies frozen)
Bath pillow (helps prevent cold bald head on cold bath)
Don’t take steroid dose after 2pm (awake/energised at wrong times), best time is in the morning
Eat fruit when you need to eat whilst/before taking tablets
Avoid alcohol for 2/3 days after chemo
Keep out of direct sunlight, ensure you have paraben free suntan lotion with SPF50 zinc oxide based and BB cream or make up with SPF
To avoid risk of infection – try to avoid un-pasteurised dairy products, wash veggies, meat properly cooked
Accept help wherever offered!
Prepare/buy nice food in advance for bad days
Sleep when you can
Fresh air - Exercise - Laughter - Ask for help if really sick! Talk to you GP for additional drugs!
Runny nose through loss of nose hair – tissues!
V-pillow
Check and see if GP can refer you to local leisure centre for cheaper use of fitness suite and swimming pool.
Constipation - breakfast of high fibre cereal/fruit smoothie/prune juice/Senna tablets
Sore Eyes
Boots hay fever relief drops
Cooling/chill eye mask
Headaches
gel pads (stick on kind used for infants/migraine)
Dry skin/rashes/spots from Taxol
gentle moisturiser for hands and feet (Paraben free)
drink lots of juice and water but leave spots on face alone as skin sensitive
Eylure great for brow stencils and brow pencils, false lashes, etc.
Amazon for real hair stick on ‘brow wigs’ Chemo bag Keep a bag packed in case of emergency hospital visit and to take on chemo days. Pyjamas, warm socks, clean knickers, wash bag with spare toothpaste and brush, face wipes, mirror, tissues, bag of pineapple pieces, anti-bacterial hand gel, book.A basket with a handle (previously from delivery of pot plants) with everything needed in it so that you can have it by the bed upstairs or carry it down to crash in front of TV.
Chemo Caddy
(A bum bag has been suggested as keeps both hands free and no restrictions on your shoulders and particularly Snugpak Response Pak (online) as “tested in war, never beaten” and big enough to take a tool kit/chemo caddy or chemo bag).
Treats – nice hand cream, chocolate, octopus shaped back massager, nail cream, buffer.
Essentials – tissues, glasses, lip salve, bottle of water, straw (in case can’t lift head from pillow), little bell (to summon family to fetch/make tea)
Once again, all credits to the ladies who have added to this making it an invaluable reference tool and thanks to Princess for starting it!
Sue, that’s amazing!! And so much easier than reading through pages and pages of the tips threads. Thank you! Have a few more bits to get before next week now I’ve read that xx
Thanks for the list Sue a few more things added to the shopping list. I hope your feeling better and get the picc line as it currently sounds quite painful. Belle I’ve given up with the football we have the ball for most of the game but never seem to get it into the back of the net…typical men never quite finish the job ? Xx
Yes, the thought of chemo can be a scary one - it is a step into the unknown for each and every one of us.
You are in a good place here - as we all support each other and will share the laughter and the tears.
You will hopefully read some great positive messages - please do not think you have to be the same. This is also a good place to share your woes and worries and to have a good old fashioned rant!
I am a few steps ahead of you, as you may have read and hope this may be of help.
The first chemo is a little bit like a test run. And for most is not as bad, as they initially thought. Everyone is individual as to side effects. I feel very lucky not to have any, which cannot be managed and am working throughout - well so far, anyway, lol. Whichever side effects you may have, keep a diary of them and discuss with your treatment team and oncologist. Additional medication can be adjusted to minimise them for the next round. You may feel a bit muzzy during and shortly after your chemo and may want to go to sleep afterwards, which is normal. When you stop taking your steroids you may experience increased fatigue up till around day 8-10 post treatment. After that most will start to feel much better for the rest of the time until the next chemo treatment. The side effects you have the first time round are likely to be similar during all of the following treatments, unless, of course, your treatment changes during the whole of the chemotherapy.
Hoping this will give you a rough idea of what is ahead.
Quick update on how I got here. Went to Breast Clinic on 2nd May with lump my GP thought was cyst and ended up being told after 3 hours of tests that I had BC. Bit of whirlwind 7 weeks since then. Even managed to get a week in the sun that had already been booked! Had lumpectomy with SNB initially. Just had auxiliary node clearance on Friday (thought long and hard re this). Am due PICC line insertion next Thursday 30th in preparation for chemo Tuesday 5th. Will be having FEC X 3 and T X 3. Radiotherapy, Herceptin Injections for a year and Tamoxifen for 5 years.
I have been reading the Forum threads since I was first diagnosed, but didn’t feel ready to post myself. However, I have found some of the advice invaluable. But there is so much information to take on board it can be overwhelming at times. Going to get a notebook tomorrow to start writing lists of items I am going to need and judging by Sue’s posts, there are many things to be got! Thank you for taking the time to do this Sue x
Sue, with regards to the Corsodyl and Difflam mouthwashes, do you start using these immediately on starting chemo and continue, or just if/when you are having mouth issues? And can you no longer use your normal toothpaste? I see the Beverley Hills gum strengthening toothpaste was recommended.
Sorry, these are probably very silly questions, but I am a Newbie, so forgive me! And yes, will be popping in to the thread for tips on looking good. I’m dreading losing my hair, in fact, it is the one side effect that I think I will not be able to cope with. But on a positive note, all you ladies who have been posting your pics over the last few days inspires me. X
Hi Alex, check at your pre chemo assessment because my oncologist told me I’d get the mouthwash as part of my prescription, along with the steroids etc. I’m not sure if that happens everywhere or not.
Sue is absolutely right, in all the photos people have posted on here the thing that stands out is not the head, it is their eyes. Hair must really distract us from noticing how big and beautiful the eyes are. I don’t think anyone could say the thought of losing their hair doesn’t worry them to some degree. I feel totally at ease with u decision not to cold cap, and to shave as soon as I start shedding. But it doesn’t mean I’m not nervous about the day it actually happens. I always find the thought of these things is worse than the reality. So I cling on to that belief and hope it’s right!!
Madhatter and Nellie, I’m sorry we have to meet on this thread, but I know it’s going to be invaluable for us all over the coming months.
Well this time next week I’ll be anxiously waiting for 12.30 to come around. Feels a bit more real now I’m on the 1 week countdown xx
Hello all, just popping in from January, so I’ve completed chemo and rads now. I have a few tips for you.
On the morning before each chemo I ate quite blandly and I didn’t eat any of my fave foods, this was because if the FEC makes you feel nauseous then your mind could associate your fave food with being/feeling sick, therefore you may never want to eat it again
Nail painting is more important for the T element of chemo
Lip balm - I went through lots of this as my lips really dried out
Hair loss, I had mine cut to a short ear length style around 10 days after FEC 1, then just before FEC 2 it started to shed so I had a grade 3 all over. The hair continued to fall out, however I didn’t lose it all. Eyelash and brow hair didn’t start to thin out until after chemo 4. Remember your nose hair will also go so you’ll need tissues with you at all times to catch the drips!
I bought corsodyl daily mouthwash and continued to brush my teeth with my normal toothpaste with no problems
Constipation got slowly worse after FEC 2, was one of the worst SEs for me, so try to keep on top of it from the start
If you have gcsf injections (for increasing white cell count) have these last thing at night along with a couple of paracetamol
Steroids, try not to take them any later than 1pm if you can
Food, during FEC I used to have cravings after each cycle, the first was cheese and tomato on crackers, the second was cheesecake and the third was anything carby. During T I fancied healthier foods like salad and melon, melon was especially good when mouth was sensitive. I just ate whatever I fancied during chemo and did put on around a stone, however I’m now 8 weeks finished and I’ve managed to lose around half of that
Water and fluid, drink lots of it to flush your system though. I drank a minimum of 2 litres the day before, day of and day after chemo, towards the end of chemo when plain water tastes yucky I flavoured it with some squash
Good luck to you all. Chemo is hard ladies, but it is doable. Make sure you line up some good box sets for the days when you’re resting. Sissy xx
Taran, I’ve already had my chemo preassessment and now that you mention it, I think mouthwash was discussed and would be part of my prescription. There’s so much info to take in, it is hard to remember everything! With regards to the cold cap, the Unit I’m attending does not provide this service, so wasn’t an option for me. And this time next week, you’ll have number one session done and dusted. The waiting and anticipation is sometimes worse than the reality. x
Sissylw1980 thanks for advice. Glad you’ve come out the other side of chemo and radiation. Hope you are doing well now and feeling good, or maybe you have surgery to face now?
Can I ask if the weight gain is due to steroids, or just to do with eating more and perhaps not being as active? I thought I had read somewhere that most women put on around a stone during treatment. Not sure if I actually imagined that though lol
Belle/Sue - looks like it will be a wait and see game with regards to the weight gain.
Belle, with the dreaded “D” for 10 days, you would think you would be like a stick lol
Hi Nellie, I’m having 3xFEC and 3xT. I think I’ll journal it all too. My bcn recommended doing it to track side effects each cycle, and lots of people on here suggest doing it too. Just think, we’ll soon be able to tick off cycle 1 and that’s got to feel good, no matter how bad we feel from the side effects!!!
Sue, comparing me and your list of risk factors just shows how cancer really doesn’t care who it gets. Apart from being a woman none of the others apply to me. No family history either. Although I have been referred to genetics. The implications of which feel huge for my daughter but that’s something to worry about after the treatment ends xx
but that’s something to worry about after the treatment ends xx