So grateful to you for posting even if its a year out. I am awaiting chemo and was looking for some practical advice to help me through. You delivered wonderfully. You didn't even know it but the post you put out then (may seem distant to you now) but has so much comfort here for me in 2021. God Bless you. This forum is the best thing I've found since I got diagnosed.
Peace to all,
This sounds like very sensible advice Ann. My treatment starts on 10th Dec and I'm feeling nervous but mostly positive. I've taken all the advice and stocked up on all things that may help with possible symptoms but I will deal with them as and when.
I hope you continue in good health and thanks again for your positive advice.
This is really helpful advice Tracy, thank you.
I am starting on 10th December and will post updates as and when.
I hope all is going well for you.
I just started docetaxel after EC and I wasn't expecting to feel so tired and achy. On EC i had bad nausea but didn't feel too tired.
The first days after docetaxel i felt fine and went on two long walks. I am usually quite active so do you think I should do my best to keep walking and out of bed? Especially if the tiredness isn't going to lessen with the rest. I have three children 5, 9, 11 and i dont even want them to come near me, I felt in a bad mood and achy and drained, which is not like me at all!!!
Its good to know it is normal and will wear off.... today is day 3.
Does anyone know why docetaxel gives aches? I can understand about hair loss etc but surely it isn't attacking the muscles or the joints?
Hi Kazz, everyone is so different with their reactions that it is extremely difficult to generalise. You are going to have EC, which is quite gentle. ( the F ingredient has been removed as research shows it doesn’t have all that much of an impact) Docetaxol is the one which seems to cause issues. Remember that ladies posting on here have problems, and those without problems tend not to post! There are ladies who have worked throughout chemo and have managed very nicely, and others who haven’t. I think that it is no good twisting and turning wondering ‘what if I can/t manage’ as you are just as likely TO manage. My advice would be to park these negative issues, and just get on with making some nice memories. These will, I found, encourage you to stay positive during your treatments. My husband and I planned holidays, looked at photos of past holidays,and generally got out and about a lot more. Even during chemo I walked every afternoon after my gsf injection. I was 70 at the time, overweight and unfit. One good side effect of the disease was I joined a gym and became more active. My thinking being a fit ‘soldier’ was more likely to do battle better than an unfit one! Things you can do is to eat healthily and exercise so your body is in good condition to accept the drugs and process them to deal with the cancer. I do TaiChi on u tube to help me relax and stay fit. I know others who do Pilates and yoga. If you are still feeling anxious and have disturbed sleep patterns then you can seek help from your GP. Stress is not good for you at this stage, so the calmer you are the better. Which is why a lot of cancer therapies are based around mindfulness. I hope you find some peace , and your treatment goes well. Let us know how you are getting on. Best wishes. Ann. 🍀💐💕
I’m set to have my 3rd cycle of EC this Saturday and my first Docetaxal and herceptin will be 7th Dec. I’ve been trying to find out if it is worse than EC or the same, but I can find is horror stories. So far I have been ok and haven’t had too many problems. Just the first couple of days after cycle one I had really bad heartburn but have been prescribed some medication for this now and have been bad with agitation and anxiety. I know it’s not till next month and I should concentrate on this weeks first but I am really worried about the side effects and how I will or will not cope. Has anyone got any tips? x
Hi ladies, went through Fec-T three years ago and yes, the Docetaxal is a bit of a nightmare. I did avoid thrush( at both ends) mouth ulcers and joint pains with lavish ingestion of high quality Manuka honey, extra teeth brushing with t tree toothpaste and soaks in the bath with Epsom salts. Did manage to end up in hospital monthly but my poor old body didn’t like my Hickman line ! Three years down the line and I’m wobbling along...a little overweight, 73 granny! 😄 Hair grows back, and bonus is the body hair is thin while head hair is good !👍. Onwards and upwards, ladies, you’ve both got the finish line in sight. Thinking of you both and sending good vibes for the end line. 😘🍀🥳
Yes I’m very similar to you, about a week ahead so I’m on week 2 of my 4th round. I hated the nausea of FEC and was so looking forward to not having any on Docetaxel but you’re right it is an absolute beast isn’t it?! Although I’ve not felt nausea I’ve had everything else, such achey muscles and joints, sores in my nose, mouth and throat, so fatigued bleurgh. However, having the end so close and in sight is really helping me through these side effects, my last session is in just 4 weeks and I cannot wait!
Also I have read that the first Docetaxel is the worst and the 2nd and 3rd tend to not be quite so brutal so fingers crossed for that! Xx
Guessing you’re well on your way with treatment now and over half way through? I began chemo 12th August and had my 4th cycle last week, the first Docetaxel. I’ve glided through FEC, other than losing my hair (replaced by wigs, Chester and Katie!), and have managed to work pretty much full time too. However, Doc has been a raging beast! I hit the floor last weekend, and have been unable to function since. Pain everywhere and thrush both ends!! My mouth feels like nothing I can describe! I can see why they do the FEC first - we would go back for a second T if it was that way around!!!
I’m hoping the team will reduce my dose for the next one to lessen the impact.
Despite my fears in beginning it’s actually been ok and I’m looking forwards to the end which is now within touching distance.
i really hope you’ve been managing well. It’ll soon be a distant memory.....
I had all Docetaxel and Carboplatin with Herceptin because I take statins and blood pressure medication so they would not give me FEC.
The Docetaxel is not bad in terms of feeling sick but it really makes you feel tired and full of aches. It is the sort of tiredness that is not relived by staying in bed either. Days 3 to about 7 are when you will feel your worst. Before that the steroids are holding the side effects in check and after that your blood starts to recover and while you don't feel wonderful you certainly know you have turned a corner.
Anyway it will soon be all in the past - mine was 4 years ago, if the Herceptin gives you a running nose or aches take Claritin hay fever tablets.
You will be ok xxx
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