Chemo for breast cancer- top tips

[Notjustabrunette]

Hi all, I am starting chemo for breast cancer next week. Does anyone have any advice for dealing with the side effects? Could be anything from the best moisturizer to best anti nausea snacks. Trying to get some bits in to be prepared.

Exercise. This mitigated a vast amount of side effects for me. Take a blanket and warm socks because you can feel cold, particularly if you’re using the cooling cap. Lip balm. Take the anti nausea drugs (I was very fortunate I didn’t need them but that’s individual). Plenty of reading material. Whatever snacks you fancy. Good luck. It’ll be ok 💐

Paracetamol for headaches. I also got Moo Goo products which don’t smell of anything ! Good luck with the chemo.

I’m sorry you’re going through this.
Top tips drink as much as you can as the anti sickness drugs make you constipated and that was the worse thing I found from the chemo.
There’s also a chance you may get a sore mouth and there’s a mouth wash you can get from your nurse for that.
I had a bag that I kept for all my appointments with all my notes in, drinks bottle, loaded kindle and iPad, head phones, books etc.
I think I also used to keep a small blanket and cardigan in it so I could be comfy.
If you haven’t already heard of Liz ORhiordan she’s a former GP and has had breast cancer herself. I think she gives pretty good advice and you can follow her on social media and she has a few books out as well.

Wishing you all the best with your treatment, if you feel up to it the best thing I did was get out in fresh air every day.

The thing I tell everyone is to buy lemon barley water - I felt like I was constantly getting a UTI, but it was just discomfort caused by the chemo. Somehow the lemon barley water helps with that. Otherwise, rest and exercise help. Be kind to yourself, it's not easy x

The hospital should give you lots of anti-sickness meds and I had very little nausea with weekly Paclitaxel. I had ondasetron and they gave me 6 a week but found 2 a week was fine and 6 was too many, its trial and error.

Ideally to add to the fun go to the dentist before hand and tell them - with the state of nhs dentistry it'll likely be private but its very tough on teeth and the dentist can do any work needed beforehand and mine prescribed extra fluoride toothpaste which meant teeth survived fine.

Our chemo unit was boiling though I find the NHS has 2 temperatures - tropical and freezing.

There was only 1 toilet between lots of patients.

I took handgel.

Food and drink were provided at ours but sometimes you needed to ask.

Parking was an issue at ours and first session we were fined and they refused to cancel it. If in doubt ask where will be ok to park. Varies by hospital.

With some chemos like paclitaxel it can be worth using ice on the hand and feet to reduce neuropathy - I took a coolbox to mine (get at camping shop or similar) with ice cubes (bags in supermarkets) or frozen peas and also ice lollies which I ate. I got no mouth issues. You can also get off Amazon ice socks and ice handgloves just google chemo socks / chemo gloves.

Drink a lot pre chemo to help get cannula in and lower side effects. Eating - I found little and often was better than meals.

If you can afford it a monthly cleaner was amazing - we got a one off clean done once a month in chemo. Around once a month I did a nice day out like to see puffins and that helped get me through it.

Find a chemo buddy and keep in touch - it helps to have others going through the same - I had 2 main ones and others I messaged less.

Keep a daily diary -I found that helped as each cycle went by.
Take EVERYTHING they give you, even if you don't feel sick take the sickness tablets.

Do not take anything nice with you, do not take anything you treasure. You can develop an aversion to anything that you associate with chemo. Wearing my favourite rings to cheer myself up backfired - I cant wear them anymore - my brain thinks it was the rings causing the sickness, so I have a total adversion to them - I have heard of other people taking favourite books/ food/ cuddly toys along and developing the same adversion

Shave your head before you start, it is better than dropping handfuls of hair all round the house, particularly if you have children who will remember finding clumps of your hair forever.

Exercise! Get up get washed and dressed and go out EVERY DAY without fail, even if only for a 5 minute walk

Join support groups at the hosptital, or on facegroup, or whatever, but be very careful about the disease becoming your identity. Make sure that you have good friends you can talk to but equally make sure there are areas of your life where the disease isn't even mentioned.

Try to keep working, keep your employer informed of what you can and cant do, keep in touch, and keep working, cut hours if necessery. I work in education in crowded schools and prisons which I could not go into because of being immunosuppressed, but my school was able to send me marking, and I took on private tuition - make sure your employed is fully informed of what you are doing and why - you don't want to be accused of doing things behind their back

Enjoy the baldness!

Dont have too many expectations of yourself, side effects are unpredictable, and sometimes you just have to change your plans

From personal experience - do not attempt to get through airport security while radioactive......

My mum had chemo for breast cancer (EC then moved to Paclitaxel) she suffered badly with dry mouth, but found that using Biotene toothpaste and mouthwash helped with that. Also, the nurses told her to drink pineapple juice (not from concentrate) as that helps too.
I'd also recommend a good moisturiser like Aveeno, as your skin will probably get dry too.
Good luck OP xx

Sorry you're going through this x I had FEC T chemo 10 years ago , no nausea at all, but fatigue like you would not believe!
I didn't lose my appetite at all and gorged out on cream cakes as a weekly treat.
Once I lost all my hair my sense of smell was so high, and my sense of taste vanished. I sucked frozen pineapple as my mouth was very sore. My skin was very dry and itchy one week and greasy the next.
I also had a fantastic oncolgist and breast nurse support along with my family. Good luck to you xxxx

My niece has just come through breast cancer age 44. Stay positive and agree with above post re warm socks, lip balm, reading material and snacks. She has been amazing and has a much more positive outlook than before her cancer. Trying new things doing things she would never have considered before. I bought her a journal to write down how she felt so she can look back and see how brave she has been. Good luck on your journey. ❤️

I actually love puffins, that would be a great day out.

I’m 45, so similar age to your niece. Glad she’s doing ok.

I’ve only just about recovered from diep surgery, which I have discovered is not for the faint hearted in terms of recovery. And actually 3 weeks before that I had a node biopsy, so haven’t been able to do any house work for the past 9 weeks. I think it might be time to get a cleaner in.

Thank you all so much for your advice. I’m off to the supermarket today with a list of things to buy.

A good cleaner is amazing - I got one that was recommended and explained about the chemo and got them to come in once a month for a one-off clean of all downstairs and upstairs bathroom. Some people have weekly but just depends what you need / would find useful.

Puffins are amazing though there is a season and I am not sure if it has already ended - Skomer and Farne Island where excellent for seeing them and now as well as all the bad associations I have of chemo I have a nice association with puffins. I didn't work in mine and for me that was good as I could put all my strength into getting through chemo. Its worth checking out benefits if you may need them - ESA and PIP are the two main ones though PIP it depends on effects rather than diagnosis but ESA will put chemo people in support group. I got ESA and it paid for the cleaner amongst other things. Hopefully you can find some other nice days out / short breaks - I found outdoors was good as very low infection risk - mine banned swimming and spas and wanted me always within an hour of a hospital if away but otherwise could do what you felt up to. Gardens can be nice and there's other wildlife especially around the coast.

I wasn't positive but you find it splits between the positive thinkers (isn't no hair great as there's less shampoo) to the moaners which was me (having no/little hair is rubbish and miss my hair) and when you find people to chat to its best to find similar thinking people - the moaners moan together. Our e-mails were like this week was rubbish and the buddy would reply their week was rubbish too but it helped to have someone to go through it with and who you could be honest with. The only thing you need to do is turn up.

It will vary by person the effects. I was quite out of it after the anti-histamine so quite drowsy in my chemos and not capable of much but that's fine. Hope it goes as well as it can.

Like @MsPengiuns I had weekly paclitaxel.
The chemo ward will give you buckets of drugs for whatever side effect you get.
I found the weekly routine a grind because you never had a break.
Diarrhoea for two days then horrendous constipation. You start to see a pattern after 2 or 3 doses.
One of the things that surprised me was that I expected to feel rough on the day of chemo or day after. In fact those were my best days and I ended up ear marking the day after for any particularly tiring activity. The reason those days were better was steroids. Some people are given oral steroids and others IV. I was given IV dexamethasone before the chemo. It keeps you awake at night buzzing but makes you feel well and energetic.

I had a cleaner for a few months to help out.
I didn't cold cap as I just didn't want the extra stress.
I met 2 or 3 lovely women online who were going through the same treatment at the same time with almost identical diagnoses. They were a godsend and we keep in touch to this day although we never met.

I wish I’d known about the cooling gloves and ice box before starting paclitaxel! Last dose tomorrow after 12 weeks but the peripheral neuropathy has worsened in past couple weeks. The discomfort is awful when I have a flare up .

Sorry to hear that @TheHonourablePenelopeBuntyWindermere If you haven't already its worth letting chemo team know about neuropathy as they can adjust the dose. I'ld let them know today so they can get a message through to oncology. I used the ice gloves and ice socks but still needed the end doses reduced to 90% - they don't like reducing early on but will at end.

Thank you @MsPengiuns . Thankfully a message has been sent to oncologist so hopefully tomorrow’s dose will be reduced. It’s my last dose so praying things start to improve but I do know it can take months.

If you haven’t already done so, register for a Little Lifts chemotherapy box
https://www.littlelifts.org.uk/
its full of lovely things to help you through chemo like body lotion, gentle toothpaste , a sleep mask etc .
I completed chemo for breast cancer in Feb but am still receiving targeted treatment (Herceptin) , I was on nab paclitaxel and found that for the first five days I have terrible bone pains .. and found heat patches a godsend .. I’d also recommend stocking up on laxative . There is no constipation like chemo constipation! Start taking the laxative (I had laxido) a day before treatment and for a few days afterwards , I found constipation eased after that
keep your triage number pinned up where everyone can see it and programme it into your phone for easy access . Invest in an in ear thermometer to keep track if your temperature too . On chemo days , I had a chemo bag with a blanket in , I’d make a sandwich and pack snacks and even a mini flask of coffee ! The staff would laugh at me getting my picnic out but because I was allergic to the targeted therapy .. it was a very long day with pre meds etc .
drink plenty if water before during and after your chemo . If you don’t have a picc line or a port it will make it easier to get the cannula in and also help flush the chemo through .
Take something to read or a craft to do to keep busy , I’d recommend ear phones so you can listen to music, watch stuff on your phone or listen to podcasts too.. it can be a boring day unless you get chatting to someone .

Thanks all. Had my first session of EC on Friday. Felt fine until Monday, when I felt like I’d been hit by a truck. Emerged from that feeling yesterday afternoon when I went on a tentative walk round the block to stretch my legs and get some air. Phew.
1 down, 7 to go.

Well done on getting through the first one. It helps to keep a daily symptom diary as good and bad days tend to be same each cycle and also helps with understand meds side effects if an issue.

@Notjustabrunette Well done on ticking off the first one - I found that I’d feel ok for about 36 hours while the steroids were in my system then would crash . The day after chemo would find me manically cleaning the kitchen at 6 am 🙈 I got so much done during my steroid phase !

I found on EC, week 1 was terrible, week 2 better and week 3 back to normal. I had 3 of them, then went onto Paclitaxel.
It was after my second that I got the scalp tingling and bizarrely the first signs of hair loss were pubic hairs. That's when I knew it was starting to happen.