Thanks so much ladies. Feeling nervous but also keen to just get on with this part! The waiting around is the worst isn’t it. Thanks very much for the extra advice Annie, I’ve added in a soft scarf and will try to remember to drinks lots too x
Good luck, Katbee with your first treatment tomorrow. Drink plenty of water to keep those veins open. Take a little scarf to wrap around your arm to keep it warm and keep the veins plump. Have mints in your bag for any queasiness, and take all your pre treatment meds. 🍀
Thank you so much for going into so much detail. It helps me so much having some idea of what to expect and what it’s like so I massively appreciate you taking all that time for me. I start my first round tomorrow so fingers crossed it al goes ok x
I too was initially diagnosed with DCIS until after surgery (WLE in my case) which was when they found the invasive HER2 positive stuff. I was told at my chemo pre assessment that everyone has different side effects but to expect to lose my hair and they’d give me anti sickness meds to help with nausea. Also fatigue which is cumulative the further you get through treatment
I read the Breast Cancer Now chemotherapy booklet and also the Macmillan one before my chemo pre assessment and consent meeting and made notes of any questions I wanted to ask. I also took my book along and made notes of what the consultant told me so that I wouldn’t forget anything.
I had 6 cycles of chemo starting in March this year - 3 FEC & 3 docetaxel. I also have 9 lots of herceptin injections which started on cycle 4 of chemo so they could differentiate between docetaxel side effects and herceptin. I joined the monthly chemo group on here and it was really helpful sharing experiences and also helpful hints and tips. My main side effects on the FEC were nausea and with docetaxel it was peripheral neuropathy. I made sure I had ginger nuts and queasy drops while on the FEC but didn’t need them when I changed to docetaxel. I was also given Udderly smooth cream by my chemo team to help with dry skin on my hands and feet which I had with both chemo drugs.
I cut my hair short before starting treatment and bought a sleep beanie so I didn’t wake up upset to see lots of hair on my pillow. I was able to buy a wig just before lockdown but must admit I’ve worn turbans when I’ve ventured out for medical appointments.
I think the best advice I read before starting chemo was to be kind to myself and not to beat myself up on ‘bad days’ when I didn’t want to do much apart from binge watch box sets. I also found ‘The Complete guide to breast cancer’ by Liz O’Riordan & Trish Greenhaigh a really useful book.
I took things one cycle at a time and recorded side effects in my cancer treatment record I was given at my chemo pre assessment. I had regular telephone consultations with my clinical oncology nurse the week before my next cycle was due so we could discuss side effects and how I was coping with treatment.
I had my first round of chemo via a cannula in my hand but my veins weren’t very good so I was advised to have a PICC line fitted. I must admit this made things a lot easier especially as I’m not very good with needles.
My advice would be to accept any help that’s offered and have easy to cook meals for days when you don’t feel like cooking. I tended to pick up on week 3 so tried to make the most of things. My taste buds would go back to normal on week 3 so I could enjoy food again.
The herceptin leaves a metallic taste in my mouth which is there all the time but this should go once the injections are finished. But again everyone reacts differently. The peripheral neuropathy (tingling/pain/numbness) from the docetaxel Is still with me but I’ve been told it takes months before it goes (occasionally this can be permanent but my team are monitoring it).
My chemo unit provided tea or coffee and biscuits and also a sandwich if treatment went over lunch time and they should let you know what to expect at your chemo pre assessment. I took my kindle along to read as my hubby was only allowed along to the first one before lockdown. I also took some puzzle books along although I rarely did much apart from chat to the nurses and the other person having chemo at the same time as me if they were chatty. I’ll admit I was terrified before I started chemo but it’s surprising what can do when you want to do your best to make sure the cancer has gone and doesn’t come back. There were the odd times when I thought I can’t do this (cycle 4) but that’s when chatting to others in the forum really helped. There were good days, bad days and days when I thought I can’t do this but it’s a great feeling getting to the end of chemo and thinking yes I did it.
My breast care nurse told me that it’s like a treadmill and you’ve just got to keep going until all the treatment has finished.
I hope this helps. Sorry I didn’t mean for it to be so long but I kept thinking of what I’d have liked to have known before starting chemo.
That’s so useful to hear from someone else who has been through it. Thanks so much Mo, good to have an idea of what to expect. I’ve got my chat with the onco nurse on Tuesday so I’ll make a list of questions to ask her too x
Oh Annie J that is so helpful thank you. Having some idea of things I can buy and prepare for is so useful and helps me feel a bit more prepared for what is to come. Thank you x
Hi Katbee, sorry you are here, as Annie says we are all different so try not to assume how it will be for you, but we all get through it. I had chemo last year, 3 fec and 3 doxe. I had picc line, which sounded scary, but was a godsend as i dont like needles and it made all the sessions and blood tests so easy. Most say fec is easier for side effects than than dox, but I just found them different. I got sickness and nausea, mainly on fec but the team gave me a collection of anti sickness pills which kept it in check. I got tired and achey, mainly on dox, but again had pills to help. You do need to be sure to let your team know if you feel unwell so they can reassure you or give speedy treatment to stop it getting too bad. You will get lots of advice before you start. The onco nurses were all really good and i felt well cared for. Good luck with yours, if you want to join the monthly thread on here for your start you will be able to share with others going along with you. Love Mo xx
Hi Katbee, sorry you are having to join the chemo club, but there are plenty of us on here who have been there, done that and got a T shirt! 😀Firstly, everyone is unique, so what one person experiences others will be different, so be prepared for the worst....but hope for the best. Your pre chemo session with your BC nurse should allay fears and explain everything. From my experience the regime you mention is pretty harsh and there can be some unpleasant side effects. Some ladies on here have sailed through it, though, and even continued working. Side effects usually include hair loss, so I am sure you have been given a wig voucher. You might want to get your eyebrows bladed. I wish I’d had mine done as they were the first thing to go. I did attend a super make up session which showed me how to manage that. You may get mouth ulcers , which I didn’t, but I got some t- tree toothpaste and Manuka honey which I still use. Didn’t get Thrush either, which I put down to these. Nails are often weakened , so I got manicures sorted and chose dark nail varnish to protect from sunlight. No gels advised though as UV light weakens nails. Aches and pains are a common side effect, and I got Epsom salts which seemed to work well for me. You will be given anti nausea meds by the hospital, but I kept ginger biscuits , mints and peppermint tea on hand. I think being as healthy as you can will make sure your body is fighting fit. Keeping positive mentally is the best thing you can do. The road can be a bit rocky at times, but, like thousands on here who have already navigated it, you will and can do it. Best wishes.x
I’m starting chemo next week following a mastectomy a few weeks ago and am suddenly feeling really daunted and nervous about the whole thing. We thought it was just DCIS until after surgery so its a bit of a knock back finding out I’ve now got to go through chemo. I’ll be on FEC for the first 3 rounds and then doxataxel and Herceptin for the last 3 rounds. I was just wondering if anyone could give me any idea of their side effects and how they felt while on these drugs? And any top tips and advice to make the whole chemotherapy experience more bearable would be wonderful. Thanks so much