I know that there are many forum users that have either just started chemo or are about to start. When I started in May I searched high and low for ‘top tips’ and found them to be invaluable. Now my chemo is coming to and end and I know there are so many others that have either just finished or are about to. So, I was wondering if we could pull together and share with the newbies any handy hints or tips that have helped us through chemo? I can only really comment on E-CMF as that is the chemo I’m having, but I know that there are many of you that are having different ‘cocktails’ so hopefully, between us, we should pretty much have it covered!
So, here goes:
Buy an ultra-soft bristle toothbrush. Colgate do a great one for adults. They are much less harsh on your gums than electric or stiff bristle toothbrushes and help prevent gums bleeding which can occur if your platelets are low.
Good oral hygiene is essential, particularly on CMF when you can be prone to mouth sores and ulcers. Use a good ‘alcohol free’ mouthwash regularly. I have always used ‘Dentyl icy cherry’, its delicious!!!
Invest in a decent baby’s hair brush. ‘Denman’ do an excellant one, which although a little pricey, is defo worth every penny. Before your hair falls out your scalp will get very sore, so using a soft brush is more soothing than a normal one.
An excellant website to check out for all manner of things, inc head scarves and even eyebrows is www.headcovers.com. Although American the delivery is v.cheap and quick. Many of us have purchased their wonderful ‘terry towelling sleep cap’. Its ideal to wear in bed if your scalp is sore or cold!
‘Travel bands’ (about £7 from Boots) are an excellant alternative to pill-popping if you feel nauseous. They can be worn day and night, and though they may not work for everyone I have found them to be invaluable!
Lucozade! What more can I say?? It has certainly helped me restore my ‘get up and go’ on many occassions. I always have a hefty supply of lucozade in the cupboards around chemo time.
You will need a decent digital thermometer. Ideally temp should be checked under the armpit as it gives a more accurate reading. Boots do a digital thermometer for around £8. (I don’t work for Boots by the way!!!).
Ginger in most shapes and forms is great for nausea. I love ginger ale and can normally be tempted my a ginger biscuit or 2. Strictly for medicinal purposes of course!!!
Pineapple is great for keeping your mouth clean.
When having CMF one of the drugs can give you a horrid taste in your mouth and a feeling up your nose like you’ve just jumped into a swimming pool! You can prevent this by eating sweets or sucking on an ice-lolly whilst it is being administered. Personally I take a ‘mini-callipo’ ice lolly with me each time I go and I never suffer with these feelings.
Try to eat a light meal before you go for chemo. Hard though it may be its not a good idea to go on an empty stomach.
Drink, drink, drink!!! The more fliuds you can handle before and after the better you’ll feel. Get it in any way you can but obviously plain water or sugar free squashes are best.
If poss do not take your second dose of steroids later than 2pm. They are known to cause insomnia and if you take them too late you’ll prob be ewake half the night! Also, they can cause constipation. Starting the day with a high-fibre cereal and a fruit smoothie can help keep the bowels in order!!
I really hope these help for starters!!! Hopefully other chemo goers will give their top-tips too.
not sure what combination FEC and EC are but I would guess that the E is Epirubicin, which is what I had first, and the F is Flurocil (or 5FU) and the C is Cyclophosphamide. If that is the case then the tips I’ve mentioned are defo appropriate for both of you as the E-CMF incorporates all of those drugs, its just you’re not having the M (you’re not missing out though, believe me! LOL!!),
I don’t have much to add - I think I used most of Kelly’s tips though!!!
I found fizzy water or tonic water was really good for the nausea. I also kept the ginger biscuits near my bed and nibbled a bit before getting up in the morning otherwise I felt sick when I stood up.
Wow Kelly you’ve come up with some really helpfull tips,
can’t think of much to add!: possibly
keep out of direct sunlight as it seems to make one feel more queasy
keep off booze for the two or three days following chemo - it definatly makes the nausea worse
stick to a sort of pregnancy type diet - ie no unpasturised dairy stuff, wash all veggies well and make sure meat is well cooked
use the thermomiter - helps to distinguish between a hot flush and an infection
try the cold cap - dosn’t work for everyone but I was really very pleased it did for me
cheers
caroline
Cecelia did you lose your hair with FEC? I haven’t got round to asking yet - when you go in to see them you can only ask so many questions at one time and take in the info they are giving you.
As a new to chemo girl thank you so much for your thread.
I can only add that I was advised to take aloa juice to help boost immune system but have only had one chemo so far EC with no side effects yet as it was only 2 weeks ago.
Still have my hair but scalp soreness starting so was told nioxin shampoo might help and it has. I use a childs first toothbrush because we had a new one in the house and it seems to be doing the trick plus loads of hand washing and moisturiser after.
only 3 more EC to go the 4 Tax, so will let you know how I get on with that.
Thanks for the tips, I don’t have a date for chemo yet as next week I have a bone scan and a PET scan before starting treatment but I will make sure I try your tips.
This thread is great. I had 3 FEC and have now had 9 taxol with 3 to go (weekly fun…!)
I would agree with everything Kelly has put above, especially about the mouth and eating before chemo. I had a very alarming night of crazy dreams on the steroids when I took them too late so defo early better.
On FEC I felt pretty sick. A top tip for me would be don’t think you have to and suffer in silence. I threw up for 24 hours after my 2nd, and they took me in and gave me anti sickness through IV which worked a treat and told me I should have come back much earlier. They can sort your drugs to sort your sickness so please don’t sit and home being poorly and not call them up for help.
Taxol is making my hands and feet odd - rashes and a bit sore so lots of v lovely gentle moisturiser is v good.
Also, defo agree with Kelly about the constipation (oh the things we share on here!!) I have nice cereal and juice too and stacks of water.
On taxol about 2 days after I get spots like I’m 13 again. Yuck. But as skin is sensitive have found is just better to live with them then try and put anything on to get rid as it made skin v dry and red. Drinking juice and lots of water helps.
the ‘cold cap’ helps to prevent hair loss/thinning. The Epi you will be having as part of your FEC chemo is the one that causes hair loss. It usually comes out a couple of weeks after the first dose, mine actually came out 2 days after the second dose though.
Anyhoo, personally I chose not to opt for the cold cap as generally you have to keep it on your head for quite a while before and after and I like to get in and out as quick as poss!
I know there are loads of fellow forum users that have tried the cold cap so I’m sure they will give you loaad of advice. I know it deosn’t work for everyone but if you fancy it then its defo worth a try,
Apologies for the late reply, I didn’t keep up with this thread very well.
Yes, I did lose my hair 2 weeks after first FEC. Cold Cap used, it can work to freeze hair follicles (I think that’s how it works) and some people can retain their hair. The E bit of FEC (Epirubicin) is the thing that causes hair loss I hear.
I have had only 1 dose of Epi so far, and 3 more to go, followed by 4 lots of CMF. I felt nauseous for the first few days after, even with the domperidone for sickness, although I wasnt actually sick anyway. After that it has subsided and my appetite is definitely back! I found the ginger biscuits worked for me and this week mymouth is a little sore so I am rinsing with Oraldene they gave me at the hospital and it is working, as well as fresh pineapple and I have found out some old ice lolly moulds from the bottom of the cupboard and made some pineapple juice lollies. I will probably have one tomorrow to keep my mouth fresh. It tastes of old socks at the moment, but that could be the afteraste of my lemon meringue pie! I think if you eat smaller more regular meals, it helps keep the nausea at bay. My scalp has been sore this weekend, although I did have the cold cap and will use it again when I have my second dose a week on Tuesday, I have had a wig courtesy of my hospital which arrived on Thursday, so at least I can wear that if my hair falls out anyway and even wear a hat ontop if I feel conscious of it. At least I am partly prepared, I think.
Lenise
I did 3 x FEC with cold cap - still have almost all my hair (v.v. small bald patch on top) - starting Taxotere this week, so unsure what delights that will bring…but I think if you are worried about losing your hair, then you should give the cold cap a try. All I can say is try and make sure it fits tightly and touches as much of your scalp as possible - that does make a difference.
Good luck
Ali
x
hi
i did the cold cap but no luck for me - looking like i’ve had a very bad head shave possibly due to the presence of lice. onwards though, i’m off to get a wig this morning and have got come bandanas and hats which don’t look too bad i think. why not try the cold cap though - it does work for some…
jo
x
I am finding I love my Buff headwear for days and nights since losing hair… so comfortable and no seams! Just google them and you can find them if interested.