1st chemo advice/tips

Hi Munchkin 

I am 66 and have just done chemo waiting radiotherapy now.

Ask lots of questions the nurses are very knowledgeable. 

The first EC I had was not too bad. You have steroids for 3 days and once they stop you may feel tired. Everyone is different and reacts differently but you must keep asking questions don't be anymore worried than you have too. 

Hope all goes well xx

Not easy with young children hope you have some support if not there are family support workers which can help. 

I was still able after first few days to walk the dog and see my grandchildren. Covid has made it harder but wear mask and be mindful all should be well. ️

Take boiled sweets to suck whilst certain drugs are being administered. Some say ice cubes sucked, helps prevent mouth sores. Jo x

I'm still using tinted moisturiser, mascara and eyeshadow. Not a problem. I brushed my hair as normal, then cut it shorter, then pixie cut, then shaved as was horrid seeing coming our regularly. You can do this!. All the best for tomorrow. Having my 4th cycle tomorrow. Already had 3 FEC, moving onto Docetaxal plus Herceptin Injections next week. Jo x

Hi Gander, with EC  i have had one but do others get worse as you go on ,? 

Hi Munchkin,

No, everything doesn’t stop, it really doesn’t. There’s no reason at all you shouldn’t wear makeup, or use your normal skin products.  If you’re cold capping you’ll want to be gentle with your hair, but that doesn’t mean not brushing it at all or making it look nice.  And while you need to be a bit careful about infection risk, you certainly shouldn’t be locking yourself inside the house.  I had EC and Paclitaxol and during EC I was honestly fine most of the time.

In terms of positive things to do.  Drink lots of water before and during, you might want to experiment with various squashes/flavours to keep it palatable.  Take the drugs they prescribe, it’s easier to keep pain and nausea at bay than it is to treat it once it gets bad.  Try to keep a regular exercise routine as it really helps with the side effects, even if that’s just a brisk walk every day, the sunshine and fresh air is also really good.  Keeping a routine also helps, having the children around might enforce  that!  Do listen to your body, you will need more rest than usual, you’re appetite and tastes may change and you need to eat what and when you fancy.  Outsource anything you can so you can focus on nice things and the children, so get groceries delivered and accept help from friends and family. But please don’t assume you will be bedbound and sick for the whole time, for the vast majority of people it’s not like that.

Big hugs, hope it goes well tomorrow 

I have had 4 EC now and am cold capping, too. The nausea is bad the first 2-3 days, but they should give you plenty of anti sickness meds home with you. I wasn’t actually sick.

There’s a horrible metallic taste the first few days, which makes finding acceptable drinks and food tricky. This eases but is still generally yucky and salty throughout.

I would be constipated the first few days, but that was more a side effect of the anti sickness meds, chemo itself can cause diarrhoea later, but it’s ok to take Imodium or laxatives as needed.

I got steroids for 3 days, so had a bit of fatigue after they finished but it wasn’t too bad. By about the 4th day, I would start to go out for a short walk, then build this up daily. By about 10 days, I pretty much felt back to normal and would try to pack in as much as possible.

Keep a note of side effects as it tends to be the same pattern each time.

If you get filgrastim immune system injections, they can have side effects, too, like bone pain, headaches, back spasms.

Chemo dries everything out, skin, hair, eyes, etc. I use dry eye drops and ointment at night. If you are a contact lens wearer, ask your optician which drops are suitable. My eyelashes are short and sparse, which makes the eye irritation worse.

Make up is fine, and moisturiser is important when skin is dry. Maggie’s centres offer tutorials on make up and scarf tying.

I haven’t lost my eyebrows yet, some women don’t till after chemo. You can use make up or stick on ones if needed and false eyelashes or magnetic ones.

EC is particularly harsh on hair even if you cold cap, so realistic expectations help. I have lost about 90% of my hair, but still have some long hair to stick out under hats and scarves. The slower loss helped adjust psychologically and your kids will get used to your new look quickly and not be phased. They do say that cold capping helps preserve follicles, prevent permanent hair loss and helps with faster regrowth that looks more like your usual hair.

You should get a wig voucher. I just use mine for special occasions, hats and scarves outdoors.

Cold capping is doable. It’s really cold the first 10-15 minutes but you get used to it. Take paracetamol and ibuprofen about 20 minutes before, and download movies to watch to distract you. I have small ear buds that fit under the cap.

It is usually the Paxman system, and they have a great website with lots of videos and information, so have a good look at that. The nurses are not always great with the caps. You need to wet your hair and apply conditioner (any one without sulphates, parabens, colour, fragrance, silicones) before the cap goes on. The unit may have these, but it may be better to bring a spray bottle and conditioner with you, and your brush or comb. You will pre cool for 30 minutes ( or 45 minutes if you have thick hair), then the infusion time, then a 90 minute post cool. You then wait 5-10 minutes before taking cap off. Your hair will be wet afterwards so a hat may help for going home. You need something to protect your forehead, like a headband or panty liner or make up pads, so maybe bring this. My chemo unit gave me a strip of tubigrip bandage to use. You might need a blanket, or neck cushion for comfort. I brought loads first time that I didn’t use. Bring snacks, drink, earphones, gadget, charger.

After cold capping, you have to baby your hair. Wash out the conditioner within 24 hours, you can wash your hair no more than twice a week and no less than every 10 days. You have to be gentle washing it, just smoothing it on, not rubbing. There is good information on their website. Make sure you are brushing twice a day to remove loose hairs to avoid matting. Matting can be a serious problem when shedding starts. Also brush before washing hair, and after it dries. No heat to be used on hair, but a hair dryer on cool setting is just about acceptable.

Shedding usually starts at day 14-21, mine was day 18 and continued till about a week after my second chemo.

There’s a Paxman scalp cooling Facebook group which is really supportive and you get lots of tips. There’s also a generic cold capping group, as there are lots of manufacturers, manual caps used, especially in the USA.

A silk or satin pillowcase is a good buy, and a nice tangle teaser brush or wide comb.

You might want help with the school run the first few days. I told a few of my youngest’s friends mums and they have been great, then I told the whole class group when Covid was going around. 
You will get through this. The first is the unknown, although I still dread chemo day! 
Best of luck x x

Hi

i would just say not to panic when (if) you have a big shed of hair around day 18. I lost A LOT and it’s still shedding daily but persevered with the cap for round two of EC and my scalp is ok so I can hide it if tied up. The first 15 mins with the cap are horrid but you then don’t notice it.

I have found EC tough with young children so if you can get family on standby to help. However, it is doable and I have one very rough week and two completely normal ones (only had two Ec so far), so just mark the days off and tell yourself you’ll be fine in a week.   Only just had ny referral for ovarian suppression so not sure how that will add to things for you.

good luck xx 

Not much worse, for me. Very loose stools, fatigue at times, coping okay. FEC done for me now. It's all the 'what if's', wondering how I'll be on next 3 cycles of different drug plus injections. Jo x

Thank you x