I love this site and have found some very useful tips offered by people in the know. I am trying to keep very positive in my journey and have done some research into my triple negative inflammatory breast cancer. I on currently two weeks post 2nd cycle of 3 of FEC and apart from a few set back I have managing to stay focused, but yesterday I made the big mistake of looking up my next chemo Docetaxel in preparation for my last three cycles. I have scared myself silly and wondered if anyone who has had this type of chemo can give me any words of encouragement? I know everyone reacts differently, but not seen many positive thoughts on this drug.
Hoping everyone is copy well and wish you all good health. xx
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Dolbycat
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I had FEC-T, managed well with the 3 cycles of FEC, worked in between them. The T part knocked me for 6 after 1st one. I would advise you to be extra vigilant with hand washing, ensuring food is prepared and cooked well and that you stay away from anyone that is feeling unwell. Pay close attention to how you feel, I went to bed one Saturday night after 1st T and woke up Sunday with no voice, high temperature and feeling drained, rushed to hospital with neutropenic sepsis, I had a large mouth ulcer which they believe let infection into my body, IV antibiotics soon sorted me out though. I'm telling you this not to add to your fear but for you to learn by my mistakes, I took feeling well on the chemo for granted and just carried on as though I wasn't on it, working, being out in public as much as ever etc...public transport and shopping trolleys are breeding grounds! Its not pleasant experience but it is doable, as proven by most on here and beyond. Really rest, even if you feel you dont need to, trust me, you do! and have antibacterial hand gel with you at all times.
Thank you for the honest truth Cazlav. I have heard of similar experiences, so knew it was a harder than the FEC. I have been told by a few people not to ignore my tiredness on FEC and rest more, so I intend to be extra careful with the rest of my chemo cycles. I would rather be prepared for what to expect than to kid myself and end up struggling. I was in A&E 10 days ago with a throat infection and raised temperature, so don't want to make that mistake on the T cycles. Thanks for your help and hope you are enjoying good health now. x
It is a tough one, I ended up in hospital with neutropenia and oral mucositis... that was grim to say the least. Get yourself some Kingingival mouth wash and regularly rinse with salt water. I was lucky not getting sick, that would have finished me off altogether I hate being sick 🤢🤢 now however (I am also triple neg) I am doing ok. They have to use the strong stuff to kill off the cells. You take care and I am wishing you all the best for the rest of your treatment. I have been keeping a blog on my experience feel free to have a nosey - it may allay any fears you have. elainemurphy66.blogspot.com
Thanks Lainey, I will look up your blog and follow your progress and advice. Glad you are feeling better having made it through this journey, you are an inspiration. Take care and hope your good health continues. xx
Docetaxol is tough, but you can do it. I found that days 1 and 2 after having it, I felt fine, and could go out, do what I liked. Day 3 you need to start taking paracetamol and ibuprofen together every 4 hours and keep it going. My BCN told me that when the effects hit, you feel like you've been hit by a truck, and she wasn't wrong. By taking those painkillers every 4 hours, you will reduce the pain as it increases. It peaks at about day 5 - 7 then eases off again. You should be able to stop taking the painkillers by day 10. You'll still feel washed out, though.
The important thing to focus on is if it is hitting YOU that hard, just imagine what it's doing to your cancer!
This is pretty much how I'd describe my account with Docetaxol. Day 2 pm the joint pain would creep in and day 3-7 would be every joint in my body in pain... I was prescribed tramadols which were great and on round 3 oromorph. I was on maximum dose so took a pounding. I had T-Fec and after the fec (1 fec and 2 x EC as reacted to Flourourcil and had heart failure 😬) I still had joint pain lingering from the 'T'... after chemotherapy was sent for X-ray and I ended up with osteoarthritis in hips and knees which wasn't there before. Swimming is helping as I was on crutches but now without
Good luck - listen to your body and REST!!
And I agree about the neutropenia I was admitted once for both T and Fec but it was during the Fec I was really poorly
BUT I'm here a year down the line and it did its job!!!
Thanks for your message Lavendergirl, It helps to know how others have reacted to the T cycles. Sounds like you have had a tough ride, but have had the courage to see it through so well done. I am still anxious but I now feel more prepared to know what to expect. My FEC cycles have not been easy but bearable with only one episode of hospital treatment. I need to be more aware of infections and drinking enough and learnt my lesson the hard way. I am determined to get through the treatment by preparing for the worst and accepting what it throws at me knowing that it is all for a better future. Your last line makes it all worthwhile, so thank you. I am so happy for you that you have fought the fight and come out the winner. well done, may your good health continue. xx
Hi Biddenden, during my Fec cycles I have been ok for first few days then hit on day 3, so probably be the same on the T cycles. The common thought seems to focus on the combination of Paracetamol and Ibuprofen so I need to take this advice. My family keep telling me to rest even if I feel well, so I need to listen to them and my body. All this advice has helped me to prepare. I know everyone is different so I might be lucky but best to be prepared. Thank you for sharing your experience , I also like your positive though of what the chemo is doing to the cancer, very good way of looking at this situation. Take care , hope you are enjoying some good health. x
Thanks for your message Maxrob. It's good to know that your experience was not so bad, hopefully I will be the same. FEC has not been easy and I am slowly getting through that, hopefully the T will be OK. I have read about the effect on nails, so need to prepare myself and take care of them before the treatment starts. Hope you are feeling well and happy, take care. xx
I also found it no worse than the fec, in fact i found it easier as I had been quite sick after each treatment and could not get out my bed for 2/3 days. Yes bones ached a bit but that was partly due to injections you get to help white blood cells recover. As with everything, every one is different but stay positive and don't expect the worst. X
Thanks Moragharpet for your message. On reflection expecting the worse is not being very positive, so thanks for reminding me as I have been very positive until I read the problems with Docetaxel. You are right about the injections for the white blood cell recovery, I too have had bone aches follow this. I took painkillers routinely to overcome that which worked for me. I need to take each step at a time and calm myself down regarding the chemo. I like to be prepared and informed by researching online, but as you say we are all different so I need to just listen to my own body and cope with the treatment by resting and being sensible. Hope you are well, take care. x
The bone aches can be from chemo as well, I didn't have to have the recovery injections, but now, ten weeks after the last chemo, by torso aches to the bone after five minutes of standing up. Good luck. Here's hoping it won't be as tough as you fear. 🌺
Thanks for your message, after reading the messages on here I feel calmer and will try to go with the flow and keep positive. Congratulations on getting to the end of your chemo, hope you soon get some relief from the aches and pains. Take care. xx
The worst I had on it, apart from the obvious fatigue and general bleurghness, was diarrhoea. But that settled after the first two treatments. As you are finding out if you can't do anything then don't!
Thank you for your message Muriel, you are right we have to listen to our bodies and rest when needed. Glad your experience of the T cycles was bearable, I can only hope for the same. Thank you for sharing and take care. x
I had 8 cycles of FEC -T in a trial 13 years ago and sailed through it. My way of getting through was telling no one but those closest to me. My partner was an electrician and l worked throughout as his mate taking two days off with each chemo and a couple of months off after the last one as l had 6wks radio as well. I cut 18" off my thick waist length hair and kept it with the aid of the cold cap during the FEC but lost the lot within days of starting Tax. Then I started getting peripheral neuropathy in my fingers and toes which would go before the next chemo but stayed in my toes after the last one (still have it in one foot) l did get increasingly tired especially the week after the last chemo ..think another one wouldve floored me!! I notice they only give 3 of each nowadays ..probably realised that was enough. I had a a very aggressive grade 3 stage 3+ TN tumour which trebled in size to 2.5cm in the three wks between the biopsy and op. The vascular invasion was off the richter scale. My prognosis was 35% chance of making 5yrs. Looks like the chemo did its job.
Hi Josie Marie thank you for your message. What an inspiration you are with your history and experience. Sorry about your hair loss after trying the cold cap. I lost my hair within 2 weeks of first cycle of FEC but it proved to me that the treatment was doing it's job. Like you, I too wanted to work but as I work in a hospital there is too much risk of infection so I am on long term sick. I am planning to return after my treatment, this is my goal. I have aggressive inflammatory breast cancer with triple negative receptors for good measure, so I know I have a fight on my hands, but keeping positive and have an excellent team at the hospital. Your story has really perked me up today and given me the boost I needed so thank you for sharing and may your good health continue. xx
I dont want to sound a pain in the butt but l've been vegitarian sice my teens and went dairy-free after diagnosis also took up power walking... so impressed my consultant had her converted before she signed me off x
Good for you Josie Marie, diet is defiantly important. I need to lose some weight but it's just not happening at the moment with all the meds I take. I eat little and often depending on how I feel and trying to up the fluids too. I plan to use the time between chemo ending and surgery as my healthy eating boost to prepare me for the treatment ahead. Thanks for your message. xx
Josiemarie, just saying for anyone reading which it's appropriate for, I have heard ( from the radiographer here) that the core biopsy can encourage spread but also a low dose aspirin has been found to inhibit metastatic spread during treatments. Sorry I cant recall the source, but at the time, I thought it relevant as it was part of clinical notes after a trial. i wished I had known. 🌺
My journey with Fec was the same as cazlaz. Very important to use hand held, antiseptic wipes etc. Also good sell by dates are important. Wear gloves for doing doing everything during this time. Neutropaenia could still set in but you will know that you have done all that you could to prevent it.
Good luck with the rest of your treatment and hope you avoid hospitalisation xx
Very good advice Chrissie2, thank you for your message. I am off to stock up on hand gel and wipes and get myself in the right frame of mind to face the rest of my chemo. I am having bloods tomorrow in preparation for chemo, hopefully on Wednesday as it will be 2 days early instead of Good Friday, this will be my last of the FEC if there are no delays after my recent hospital trip. Keen to get this chemo treatment out of the way and prepare for my surgery in the summer. Hope you are keeping well, take care. xx
I hope you did not have to wait as long as I did for my blood test this morning/afternoon. I say and waited for 3 1/2hrs!! It was not my usual hospital and hopefully will not have to go there again. They have a new suoer-super system which is obviously not working
I am usually in and out in fifteen minutes when having bloods taken. I spend enough time at Oncology which is usually about 3-4 hrs. I have spent a fortune on parking in the last 2 months. Hope your next appointment is quicker. xx
That is a massive time to wait! Poor you. I am lucky here in Australia, the doctor refers us to the pathology ( of which there are many). So I just pop along when I feel like it and it's done in a flash. Funny how they can get it so wrong! 🌺
I didn't have chemo but sending good luck love and hugs in your direction and also to everyone else reading this just about to start their chemo xxxxxxx
I worked through all my chemo doxitacal was worse . Taste buds went sense of smell was very sensitive certain smells made me feel sick ached a bit but kept motivated by work mates which helped me found if i kept going i forgot about the aches and pains x finished my treatment now had my last herceptin injection 2 weeks ago x onwards and upwards x stay positive and you will get through it x
Thanks Jilly, I think keeping busy is the key, it helps take your mind off the treatment. I just have to remember to balance this with resting too as I do tend to push myself too far sometimes then end up really tired. You sound very happy to be coming to the end of the treatment, well done for getting through it all. Good heath for the future. Take care. xx
That's good to hear, maybe I will be spared the dreaded side effects and sail through the cycles too. Thank you for sharing this gives me hope. Take care. xx
Dolbycat, I too am apprehensive on my Docetaxel in three weeks time. Questioned chemo nurses but more worried about double steroids when single doses sent suger to 25.0, these are my tricky days to come...so chatted through problems with a kind of district diabetic nurse on phone who will monitor me now. Trying extra meds today.
My injection limit is 6 though I pushed to seven with breaks...backache I can control... spasms I cant. Again Chemo nurse says to stock up on extra strong painkillers...not sure...have good pain threshold having had slipped disc, arthritis and Chiro treatments in past. Its the not knowing how the drug will act on you...once 4 is over... then we know two more of the same to go. Nearly half way and no major problems so far, its manageable. Could do with better sleep patterns though. Guess we just have to take a leap of faith that we stay away from A and E. Its Summer surely the less risky time.
Hi Berylynn, I feel the same. It will probably be OK once we have the first cycle over, just the unknown of how I will react. I feel more positive after reading the replies above and now ready to take it one step at a time. Good luck with your treatment , hope you manage your injections OK. Take care. xx
My nurse is implying insulin injections for docetaxel...thats just for steroid days...this adds another unknown factor too. Guess I am not the only one. We can do it! Xx
Hi Berylynn I have had my first round of TC with Herceptin just over a week ago reading about it scared me but up to now I have just felt a bit sick and had flu like symptons a couple of days but apart from that not too bad I know it is early days but just enjoy the good days I have gone for a short walk in the sun on those days xx
Gingerat42. I thought great no Herceptin for me as triple negative...now not so sure...no safety net. Its filgrastim that is my injection trouble, I was prescribed 10, but as an individual it didnt suit. Bloods still ok on 7. Xx
Hi Dolbycat I've waited to reply as there are plenty of good replies here. I've just had my 2nd docetaxol last Friday, after 3xfec . My side effects on fec were all manageable. I wasn't prepared for docetaxol. I find it very fatiguing like flu but without the chills and sweats; this lasted 9 days first time round. I had lower backache too but no need for painkillers until teatime on day 7. Boy! Hit me like a sledgehammer with spasms in synch with my heartbeat but! Only for half an hour until the painkillers kicked in. I took 2 paracetamol and 2 neurofen and continued to take them every 4 hours for the next 3 days.
Tho I wasn't prepared for the pain I was pleased it didn't last very long at all and was held off with 'normal' painkillers.
Oh and I am now losing my eyebrows and eye lashes which didn't happen on fec.......😳😅.
Hi Debster thank you for your message, it was interesting to read about your reaction. I agree there has been some very good replies on here and they have all been very helpful.
I am hoping to be well enough to have my last cycle of FEC tomorrow providing my bloods taken today are all OK. I will be glad to get the chemo over with as it is very unpredictable and everyone seems to react differently to know what to expect. I just like to prepare myself and understand more about my treatment. I will ask my oncology nurse tomorrow for some more advice.
My biggest worry recently has been the problem finding a suitable vein for taking blood and inserting the cannula for the chemo as my veins seem to have sunken and each time the nurses have had difficulty, I never had issues before chemo. They had to use a baby sized needle last time for my chemo and today after several attempts to take my blood I am left bruised and very sore. I am dreading the attempts tomorrow if chemo goes ahead, I might ask about a picc line which was mentioned by the previous oncology nurse.
I wondered when my eyebrows and lashes might go, they are hanging on for now but I had heard they would go further down the chemo cycles. I need to brush up on my makeup skills to make an effort.
Thank you for sharing your experience and your advice, hope you are making a good recovery and keeping well. Take care. xx
My eyebrows stayed on until the fourth round, then patchy, but no one knew because I pencilled them in. I had a pair of false eyelashes standing by in case.....but I didn't use them, as three lashes each eye hung in there...and I put five layers of mascara on them! The eyebrow grew back super fast. 🌺
Hi there Dolbycat. I had a bad reaction to my 2nd chemo and that resulted in a picc line for me which is so much better. No pain, no anxiety.
I looked up what could have caused my bad reaction (pain, phlebitis and ultimately blood clot) and one thing that stood out is the need to site the cannula at a different place each time. This reduces the risk of all the above. I would strongly urge you to make sure the nurse does this, chooses a different site and explain your anxiety.
They can also do things to help find a suitable vein like use a heat pad on your arm, place your hand and forearm in warm water, make sure you are warm with blankets and you can help too by wearing gloves, a scarf and long sleeves. It seemed a little odd sitting in a hospital wearing gloves and a scarf and a fleece but that was far more preferable than being cold and running the risks of a repeat bad experience.
Hi Debster this is all good advice I will follow so thanks. I am going to ask today if I can be recommended for a picc line as I worry about the bruising and pain caused by the cannula. Anything to help ease the side effects of chemo is worth asking for. Take care. xx
They gave me all the info about having a picc line today at my Oncology appointment and told me to consider in preparation for my next 3 cycles of Docetaxel. So glad to have had the last cycle of FEC this afternoon. Half way through my chemo cycles now which feels great. Thanks for the advice I think it would be a great advantage as today my main concern was having the cannula inserted into my poor worn out hand and veins. Take care , hope you are keeping well. x
That's encouraging to know. Thanks for your message Jacbowden it's good to hear you managed to keep some eye lashes. I have bought Wonder Brow to fill in the eyebrows but I have never worn false eyelashes so not sure what I will do if mine fall out. Not one for full face makeup but like to feel confident so fingers crossed I will be OK. Planning on going to the makeup masterclass at the hospital to pick up some extra tip. I bit of pampering to boost the confidence between treatments.
Hope you are keeping well and making good progress. Take care. x
Quick update. Just spent 5 and half hours at the hospital at Oncology checkup then straight to Chemo, all worked out well. Home resting now so pleased to be halfway stage through my 6 cycles and considering Picc line for my last three. If all goes well following today's treatment I have just over 2 weeks to regain my health in time for my son's Naval passing out ceremony. Feeling really pleased to be moving forward on my treatment plan. Now I just need to rest and drink plenty and take care of my body to avoid any hiccup this time round. Thanks to every one who has taken the time to respond to my call and support me with good advice. Hope you are all well and feeling positive. Take care. xx
Glad its gone well - sounds really positive for your special day. My hospital use PICC routinely for FEC-T. I hate needles and have found the PICC marvelous. No problems whatsoever with veins. I am aware PICC does carry risks but just have to be scrupulously careful. I hope things continue to go well. Enjoy your day out. Caroline
Thanks Caroline for your message. I am giving serious thought to having the picc line to save my poor veins. I am also looking forward to my special day for my son. Take care hope you are doing well. X
I had al 6 session docetaxel was ok apart from stomach problems but then got buscapan added and took that a havscon advance two days prior to each cycle and a week after and remained well x used mouthwash they have as preventative didn't get sore mouth , diarrhoea and biting bum when bowels own say 4-7 used glyercerin on a pad to help and careful what I ate but otherwise well and no other problems x take care rest first week after cycle and make most of two good weeks soon will be over
Thanks Maggie some good advice here. I hope I cope OK with the treatment, I will be happy to finish chemo it's starting to get to me and I want to stay positive. I know I have to push on with it though. Having MRI next week to check progress, I hope this has all been worth it. Take care , hope you are doing well. xx
In general i tollirated chemo quite well. I had FEC-T. For me the FEC was harder than the docetaxel. With docetaxel the only thing I can remember really bothering me was bone pain, it was difficult for a few days to walk up and down stairs and even standing up getting off the couch was time consuming. A hot water bottle on my legs and plenty of paracetamol seemed to do the trick x
This is good to hear Togetherforever. I have just about got through the FEC and am dreading the T. I think I have to rest more and build myself up better to cope with the next stage. Thanks for your message it has given me some hope. Take care. xx
I had taxotere and I know it can affect people differently but I wasn't too bad with it to be honest. I was very achey in my joints, I could feel the aches progress around the body as the treatment passed out of my body over about a week, I took lots of painkillers and kept pain killer gel near by.
Good thing was I didn't have the nausea that I had with my first treatment.
I had already lost my hair but I now lost my eyebrows and body hair.
I had steroids to take before each treatment which did make it hard to sleep the couple of days before and make my face look chubby.
Thanks for sharing your experience, it means a lot to know how others have reacted. I know we are all different but I hope I react better to the T than I have to the FEC. I am more prepared to know what could happen and know what to do if it does.
Thanks you for your honesty and I hope you are now recovering well. xx
I am also new to this site and I just want to reassure you that Docetaxel is not as bad as you think and you will get through it. I was diagnosed with breast cancer in 2007 and had six cycles of chemotherapy and carried on as normal and stayed positive throughout it. I now have been diagnosed with secondary breast cancer in the bones after 10 years in remission and, although the medication is harsh, I am getting through it as I won't allow it to take over my life so I travel, work and do all the things I did before so all I would say to you is that you must just say to youself that you will get through it and I promise you will. I wish you well in your journey.
Thank you for your message altunj. I know you are right and I need to get back on track of being positive. I am just feeling a bit low at the moment and have had some horrible side effects from the FEC which are bringing me down. I think the Filgrastim injections are as much to blame, I have my last of 5 today thank goodness. I need to relax more and stop overthinking my treatment before it happens. I am sorry to hear of the secondary cancer it must have been very hard to take, you sound very positive and brave. Thank you for the good advice, I wish you the best and hope you are keeping well. xx
Just be careful about getting any sort of infection. I had 6 cycles of Docataxel and Carboplatin with Herceptin and Pertuzumab, the latter was added at my 2nd cycle. I had one bout of neutropenic sepsis - after the Pertuzumab was added. I spent one night in hospital and had IV antibiotics followed by a course of anti-b tablets and I was OK but I found that every cycle my temperature went up despite having 7 GCF injections every time. The hospital agreed the answer was to just have some broad spectrum anti-b's at home and when my temperature started to go up to take them for a week. It worked. I did feel pretty rough and for about 1 week out of every t3 I had to get friends to look after my horse - mainly because I felt too rough to drive. Other than that I coped OK. You'll be OK. Just check your temperature regularly, listen to your body and don't panic! Good luck. I'm sure you will be fine.
Thank you for your message and for sharing your experience. I start my part 2 of chemo, last 3 cycles of T after completing 3 FEC cycles, in early May and now feel more prepared than before. I have had the same advice from many of my replies and this has all helped me. Hope you are now in recovery and feeling better. xx
Its been quite a week of hospital visits, but well worth the effort. on Wednesday I got the good news that my MRI scan showed that the 3 FEC cycles of my first type of chemo has broken down the large mass tumour into smaller fragments which is a "significant progress" according to the report. I am so happy that all the trials and tribulations of the chemo over the last few months have been worth it. I also had the picc line fitted with no complications. Also my blood test showed I am ready today for my next part of chemo, the previously dreaded Docetaxel. I was more confident knowing I had the picc line in place and had the reassurance about the T Treatment from my good friends on here to support me with good advice. Although it took 4 hrs in total, it all went well and I came home with a bag full of meds to take. I also got a Limbo shower proof cover which looks great and will come in very handy. It was supplied on prescription by my GP after a request from the Oncologist. So I am feeling very positive and prepared to see what this new chemo throws at me. I will keep you posted. Thank you to you all for the support and good wishes. Hope you are all doing well and enjoying the sun shire, best of luck and good health to you all. xx
Came across this string of posts and curious to find out how you fared on Docetaxol. Or Docetax hell as I've heard it called. I've just had my 3rd FEC whic I've not been too bad on but this last one has hit me on the 2nd and 3rd day. So currently lying in bed googling what T has for me in the forthcoming months.
Hi Violetta25. My chemo was last year and is now a distant memory, like you I had 3 FEC and then went on to have 3 Docetaxel. I too was dreading the treatment after all the hype about it being hell. My experience was the first cycle they usually give you the full dose, which hit me very hard, I thought I wouldn't be able to get through any more. The oncologist consultant told me that everyone reacts differently and the dose was reduced on the 2nd cycle which made it more bearable. The 3rd was much better too. It's a real ordeal having any type of chemo but the treatment worked wonders for me so it was all worth the few days I had to endure the side effects. You may be lucky like others on this site and find it better than the FEC chemo. Be brave and strong you will get through it and get the benefits to show for your pains. Good luck in your treatments and hope you have a good result to look back on like me. Take care.
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