Good to hear how everyone is getting on - Spottycotty and Blackcat, by the time you read this you will have had your fifth cycle and be well on the way to finishing. So pleased you had a good weekend away Spottycotty, it must be such a mental lifter to do and see something different. I agree re getting fed up of this ruling our lives - Lisalou - I know you have several more weeks to go as well but you will smash it. I think you adapt psychologically to what treatment you know you have to have and get that fixed in your mind. We will all be in a position where we move onto the next phase, be it surgery or radiotherapy in due course and I think (in my case) that will be a breeze compared to the chemo.
I have had a challenging few days with side effects of Docetaxel - very disappointed to have had nausea but also significant heartburn and some abdo pain, and the fatigue is overwhelming! I have literally done nothing for three days - today is the first day I have opened my laptop and actually done something (though not much). For me to be off my food is unusual but the thought of eating anything other than ginger biscuits has been too much. Hopefully that means I am on the mend and can get on with my coursework tomorrow when my brain is a bit more together. I am going to try to go for a short walk this afternoon with my husband as I am sure that will help.
Wishing you all love and best wishes and looking forward to hearing your news xxxx
Glad to hear that you have had a nice weekend away (as I’m in York, you’ve been in my neck of the woods!). All the best for your Treatment No. 5 tomorrow. I have my No. 5 on Wednesday, and I know what you mean about it all wearing a bit thin now. I think that as the cycles go on, it’s natural to feel a bit tired of having our lives governed by the chemo cycle and its side effects. I have just got back from an echocardiogram, and when I was waiting (the clinic was running late) I looked at all my past appointments on the calendar on my phone - I seem to have been at the hospital 42 times since I was diagnosed in July, if you include short appointments for bloods etc! So the end of the chemo treatment can’t come quickly enough, even though I know that there is still a long way to go as I will have surgery following chemo.
After we have had Treatment 5, there is only one more to go, so we are getting there and soon will see the light at the end of the tunnel. Fingers crossed for no infections in the final two treatments.
All the best to everyone on the thread.
Hope everyone has managed to enjoy the weekend.
we’ve had a nice weekend away in a log cabin just outside of York, very peaceful, just what the doctor ordered!!!
got home today feeling a big down as it’s chemo day tomorrow but my lovely friend has posted me a card full of motivation for me to find upon my return, it’s so lovely.
so number 5 of 6 for me tomorrow, it’s all wearing a bit thin but definitely getting there now....
Wolvesgirl, how are you feeling???
Lisaloo, it does sound like a long road ahead but hopefully it will fly by and you’ll be at the end before you know it...
Hoping everyone else is ok too xxxxx
Speak soon, hoping to not get an infection this time round 🤞🤞🤞
Granny visit will be very much under control - eldest grandson (now 9) had leukaemia just before he was three so whole family down there very geared up to risks of immunosuppression and being exposed to new germs. I won't be allowed near if any colds or school bugs around. Granny from a distance!!
morning Wolves girl
glad to hear your ok after your Treatment. I’m now 7 days post Ec so fuzzy head has lifted and started to feel more like myself again. My mouths a little bit sore this time round but making sure I keep it washed out with mouth wash and also got my freshly chopped pineapple in the fridge too.
Iv still got 12 weeks of paclitaxel to get through so still a long way ahead for me.. although I can’t believe how fast it’s gone since my first treatment on the 16th August!
Iv got out for a walk the last couple of days but it’s pretty bleak here to today. No rain but very cold.
hope everyone’s ok.
Hi wolves girl 😁 if you get the t ‘slime mouth’ fizzy water has helped others 👍 if you get hurricane botty up your carbs and bit of Imodium 👍 you are doing great 💪💪💪 when you are on granny visit just be careful ❤️ And have a lovely time ❤️😘💕💕✨✨shi xx
Thought I would message whilst still on steroid high after my first Docetaxel yesterday. All went well - still cold capping which adds time on but not as much as before but it probably works out about the same as the infusion takes longer than the three bolus meds. Felt fine last night and slept well and so far the same today, however am aware that the next two days will probably see a dip once the steroids wear off.
I only have five days of GCSF jabs this time instead of seven and have the antibiotics to start next week but thats it unless I need antiemetics in the meantime. Some taste changes noted but so far not too bad.
Fingers crossed that these three cycles are better than the last three. Still hoping to go away in a couple of weeks on granny visit to Hampshire.
I really hope you are all well and getting through this - we are nearly there, I think I was last to start and have two to go so well done us! Have a great weekend - already pouring with rain here so an in day I think - the dog certainly thinks so!!
Thanks for the reply - glad to hear that you are not suffering more each cycle. I found that with the three FEC cycles - the first was awful and I was in hospital for a week but the other two, whilst unpleasant, were manageable. Just hoping the Docetaxel will be the same and not be cumulative. I agree, I would have been really disappointed to have a delay for a week and I hope that won't happen to me but your body clearly needed the extra time and I am sure that you had a better experience because of that additional week recovery. Nearly there - keep well and as you say, we will all soon be looking back on this as a memory! xx
Hi everyone, and thanks for sharing your Docetaxel experiences. It sounds like we're all suffering similarly - although as I think I said before, I've had no nail problems and am only moisturising them with plain Nivea cream. I had my fourth Docetaxel cycle last Thursday (with all the other drugs I'm having) and have only just starting going 'downhill' today (Day 5). I guess I'm used to the symptoms now as I haven't been on another regime but, so far, each time has NOT got worse... so please try not to worry. I had to have a week's delay last time because of low platelets and, although it was annoying and a bit upsetting to put the whole course back, I'm now thinking it might have actually helped - a short break to give my body a chance to get a little better before the next onslaught.
I do agree it's constant adaptation - with what drugs we're taking to ward off nausea etc, best foods to eat, sleeping/resting etc. Each cycle I've thought I could predict what was going to happen next, and then something else happened instead! You're right though, Wolvesgirl, we are definitely getting there... it did seem like too huge a mountain to climb in August, but I'm starting to feel we're reaching (or have reached) the peak and it's downhill from now. And we WILL all get through it - this time next year we'll be laughing about how many medical terms and names of drugs we learned, even though we'll have forgotten them all by then.
Good luck everyone, Julie x
Thanks for the post - and for the Evonail suggestion. Glad to hear that so far it has been good for your nails - I will probably paint my toenails red again before Thursday (they are having some time off at the moment after a summer of being painted) but will just have the Evonail on my hands. Thanks as well for the information about how you have found Docetaxel - its always reassuring to read your words. As I said, some people have clearly really suffered with it and its hard not to be slightly concerned when you read things. I am sorry you have had some gastrointestinal side effects but it sounds like you have them under control now. Its just a constant adaptation isnt it?
I have just had my call with the CNS who was one that I don't know but she was very helpful and kind. She was able to assure me that due to my initial reaction to FEC when I was in hospital for a week they will keep me on 80% dose which I am pleased about as hopefully it will make sure that the side effects are proportionally reduced. I was worried that it would automatically go back to 100% dose as its a new drug. She also said, interestingly, that the majority of people on FEC-T have a dose reduction at some stage but given what I have told her she just said that I seem to be pretty sensitive to medication. Goes to show how vicious it is as a treatment so hopefully its zapping any cancer cells it finds hidden away. We talked about all the side effects you mention plus the fact that the "danger days" for neutropenia are a bit earlier with Docetaxel at days 7-11 which probably explains your slight pyrexia on days 9-11. I noticed a similar temp rise during my last cycle of FEC but it didn't go above 37.5 (nothing like cycle one) and actually when I checked in the other ear it was always a bit lower so I split the difference! Like you I have the GCSF injections so am well used to them now. We did talk about the SE of that but as she says its really hard to know if its the injections that cause certain things or the chemo. I personally feel better once I stop them but who knows.
I told her we are away for a couple of nights to see the grandchildren this cycle which she was OK with as its later in the cycle and gave me some advice about keeping safe. She also said that Docetaxel is less toxic on the veins especially when compared to Epirubicin which has pretty much wrecked the veins on my right hand. However, I now feel more confident that the veins on my left will survive the next three infusions.
So we are getting there aren't we? Soon be November and we can all say we are in the last month or two of treatment. It seemed so far away at the beginning but I do feel that time has sped up over the last few weeks. Thanks for your support - will post after Thursday. xx
looks like I’ve missed loads since being away, lots of reading to catch up!
Ive been pretty poorly after my 1st docetaxol to be honest, the day after treatment I was sat in Starbucks feeling pretty chuffed with myself because I had no nausea and that I would usually be out for the count for a week after EC!
Anyway, my symptoms were extreme tiredness, I was falling asleep at the drop of a hat but then fatigue too, I really couldn’t be bothered to even speak at times ha ha!!
I was having 6 poos a day which the hospital weren’t too bothered about as it was soft not runny and I was waking every hour and a half throughout the night with hot sweats, I
I started to feel unwell on day 5 with a sore throat, again I rang up and they said just to monitor it, day 6 and 7, the pains started, felt like I was in labour with the pains in my back but the pain was everywhere else too. I took co codemol which did help but I couldn’t make it to 4 hours without the pain returning so I had 1 tablet every 3 hours to keep doses up.
I then felt really shivery, hot/cold, again I rang up and was told to monitor. Got to Thursday morning, woke with a temp of 38.2 so was told to go in and take an overnight bag 🙄
Was put on a drip, bloods etc done and ended up being sent home with antibiotics for 5 days.
I won’t lie, it’s been an awful 2 weeks, I feel well today for the first time and I’ve only got 6 days left before the next one 😩
I do wonder though if I would’ve found this round so bad if I hadn’t picked up this infection, it’s hard to know whether it’s the treatment or the infection, I just wish they’d told me to go in on day 5 when I rang with the sore throat.
What I’m trying to say is, don’t let this put you off Wolvesgirl!!! As you day everyone is different and no nausea has been great!
I have black nails on my thump and one finger as described in the half moon which has not showed any signs of leaving as yet, I’ve been using Sally Hanson vitamin E nail oil which seems to be doing its job up to now🤞
Anyway, hope everyone is well, we are all counting down to the snow aren’t we...can’t gone soon enough!!
Hi Wolvesgirl and everyone,
I hope that all on the thread are OK, and will have a good week. I’ve been using Evonail regularly since the beginning of chemo at the start of August, and I think that it is doing a good job of protecting my nails (which are looking healthy and strong even after 2 x EC and 2 x docetaxel/herceptin/perjeta). I think that it is mainly the docetaxel that affects the nails, and on each of the two last cycles I have noticed on about Day 5 after treatment that dark half-moon circles appear on the nail bed at the bottom of my nails. These then gradually disappear over a few days and the nail goes back to normal. Other people on docetaxel in my unit have had the same thing. One person who had not used Evonail (or similar) now has permanent black areas on her nails, and also has some nails coming loose on her toes.
I think that docetaxel is definitely seen as a hard-hitting drug in terms of side effects, but my oncologist told me that it is also one of the taxanes that has proved to be most effective, so if you can tolerate it, it is worth the side effects. I am on Day 13 of the second docetaxel cycle now, and I am not finding the side effects too bad, although there are a certainly a few of them. In both cycles, on Days 1-4 I felt very well (and of course was wired up by the steroids). On Days 5-9 I had a bit of bone pain after the filgrastim injections (this was managed with paracetamol), plus some digestive problems (speeded up digestive transit and some loose stools/rumbling innards/wind, although not diarrhoea as such - occasional loperamide helped with this) and also a most disgusting taste in the mouth which put me off eating. On Days 9-11 in both cycles I have had a slightly raised temperature in the mornings (37.3-37.5, but always coming back down to about 37.0 by lunchtime), plus a rash on the cheeks which subsided over a couple of days. From Day 9 onwards, I found that I could eat normally again. On the first cycle, from about Day 14 I felt back to my usual self and also was quite full of energy - so far I have never felt too physically tired on the docetaxel. I am hoping that it will be the same on this cycle.
I have not had any symptoms of peripheral neuropathy (so far), but this was something I was concerned about as I know it can be caused by docetaxel. Some people in our treatment room have had this and have noticed a tingling in their feet when the drug is infused, but I have not experienced this myself.
I have two more cycles to go with the docetaxel, so am hoping that the side effects don’t get any worse over time. The bone pain was definitely much less on the second cycle, but this is probably because I did the injections in the evening. The digestive issues are a pain, but I am a getting more used to how they affect me and when to take the loperamide to control them.
I hope that all goes well for you on Thursday, and that you don’t find the docetaxel too bad. We will look forward to hearing how it goes.
Hope you are all OK. Lisa - I am using Evonail too - it was Blackcat that mentioned it so I got some from Amazon as I would rather not paint my nails - it looks weird to me having colour on them! My nails are pathetic anyway so I am bracing myself for them to be affected with the Docetaxel and am just keeping them short and neat(ish).
I have my call with the CNS today prior to my first Docetaxel on Thursday. Feeling apprehensive but in a way pleased to be moving on - as we all seem to be - to the next phase. I think I have read too many posts on here and Macmillan of people saying how dreadful it is so I am just remembering my consultant saying that everyone is different so trying not to be too worried.
Take care everyone and keep safe xx
Hi Becki and everyone
thank you for the update on how your pax is going. I had my 4th and final EC Yesterday, feeling ok at the minute and not too much nausea last night which is a good thing. Iv got an ultra sound over the next three weeks and a meeting with the surgeon. Then all being well onto pax starting the 8th November. Thank you for the tips on the nails. Mine have been ok on EC but I think it’s the tax that can be harmful to your nails. Iv got something on amazon I think it was that I was recommended called evo nail. It’s just a clear liquid and You just paint it onto your nails. It moisturzes and strengthens your nails and also has a UV filter.
hope everyone’s ok and has a nice weekend.
Jumping in here from June chemo 2019 thread.
re nails - i was told by a friend who went thru chemo to paint my nails n toe nails with a dark colour polish ,which i did from my first session.
i also kept my nails out of bright sunlight and had no problems at all with them. Its something to do with uv sunlight.
im now 2 months since i finished my chemo and nails still good but maybe a little weaker. No black nails or nails lost 👍👍
good luck. Mini mad xx 💖💖
Feels like we're all getting a bit of a chunk of this under our belts now, Julie - that's frustrating with change of plans, I feel your pain a little having had a two week delay with blood clots and suddenly all my plans for a chemo free Christmas were scuppered - have you had your 4th cycle now? Really interesting to see the difference in how things are administered. On fortnightly EC I had an appointment 2 days before each cycle with the oncology nurse consultant or chemo pharmacist, and they checked my blood results and we chatted through the SEs and it felt quite a thorough check in (although I blinking suffered on EC so maybe they gave me more time knowing I'd been ringing the chemo line most weeks!)
Today was my second weekly pax and it felt MUCH more casual - I did bloods at 11am and then snuck away for a nice lunch (I went on my own for everything today as wanted to just sit and listen to my podcasts after a busy week - I got a few pitying glances as being probably the youngest and slightly lonely looking patient in the ward today, but I was quite happy particularly as weekly pax is quite quick!). Clearly bloods were okay as I was called back in for 1pm chemo, the lovely chemo nurses met me but the check in was just 'how are you' and when I said 'okay' that was it! I don't think I clocked that this was my actual medical check in rather than just small talk. I think I get a proper chemo nurse clinic appointment after my 3rd.
Pretty sleepy now, but last week after my first pax was fine in the main - on day 3/day 4 I needed a bit of downtime mid-afternoon, but otherwise actually did quite a bit of house sorting, made a few yoga classes and saw some friends, plus managed to really make the most of doing school pick ups for my eldest and spend some proper time with her afterwards (when I'm at work she's often at afterschool club). I can sense that the tiredness will grow, and I'm getting lots of niggly things, crumbly nails, bad stomach, weird dry puckered hands and a bad stomach, but no crippling nausea or overwhelming constant fatigue, EVERYTHING CROSSED for this week. I've a little work planned and a few other bits and bobs I'm hoping to do in the next couple of weeks, but all on a 'might need to cancel' basis if things aren't quite so smooth...
louisefpage or anyone else - are you trying the freezy gloves for fingers and toes? My nurse reckoned there wasn't much science behind this so I didn't really look into this, but my fingertips are feeling a little strange (but feels the skin behind the short crumbling nails rather than the nerves) and I'm wondering if it's just worth a shot as well as the dark coloured nails.
Good health and speedy treatment to y'all! xxx
Hi there, I am currently reading Victoria Derbyshires book 're her experience with BC and chemo and she wrote that she painted her nails with dark polish as this was supposed to assist ?? Have no idea why but sure others can help, wishing you good luck on your journey.
My toenails have started to go black. They are very tender. I have read chemo causes this. Any suggestions please how to stop this. Many thanks
That sounds really organised and absolutely the sort of thing I would like to do - I love a spreadsheet! In a funny way I wonder whether having such a process has helped you with how you have managed this process - whilst I know that side effects happen whatever anyone does, there has been a lot of research to show that being well prepared about something, generally surgery, has a positive effect on how a person recovers. Wouldn't it be interesting to do a comparative study on different chemo units, their processes and patient reported outcomes......wonder if its been done!
Hope your docetaxel combination is still OK and you are managing to be out and about. xxx
Thats great seeing the pharmacist - I haven't seen one at all during this process although any amendments to drugs seems to happen seamlessly. Good luck with the last EC - what comes after that? I have my first docetaxel next Thursday - bit nervous but glad the FEC is finished. xx
Thanks for the reply - your experience is much like mine - I actually have my bloods done in the phlebotomy lab so don't go the chemo day centre so there is no discussion at all. Then I rock up the next day at the centre, the nurse looking after me (has been different every time but all excellent) discusses my results and goes through how I am etc. In between treatments so far I have had two face to face sessions with a CNS (same one both times). I was due to have had another this week on Saturday with the Consultant as I was adamant that I would stop after the last FEC (cycle 3). I think this was probably because on cycle one I had an admission and on cycle 2 I just got very down and couldn't shake it off. However, I have had a change of heart and I phoned and suggested that was a waste of a Consultant appt and so I have a call booked with the nurse on Monday. That suits me much better as one of my issues has been going onto site all the time - I just really value not being there (probably because I worked there I think). The normal plan would only be to see the Consultant before treatment and then between cycles 5 and 6 to discuss and start the process to get into radiotherapy so that will happen as planned. I have found that the CNS is very knowledgable and can answer any questions I have. I rather like the idea of Blackcat's spreadsheet - sounds very organised.
All the best xxx
Isn't it interesting? I think generally we seem to feel well looked after - I know I do - but the variation in processes is wide. I am sure there must be some NHS England overarching strategy for cancer care which probably gives baseline requirements. There are Cancer Networks that measure care I think (dredging my mind back to my working days) so presumably there are measures that each centre and cancer type has to achieve. One day I might feel like looking it up!
Hope you are all well - we have had lovely weather here the last couple of days and for the first time (not just due to the treatment but also weather and other commitments) for ages I was able to walk with a friend yesterday evening for about 2 miles which was just lovely. She was my boss at one time and has been such a support during this journey, especially the darker days when she has helped me get a grip of myself and how I am dealing with the challenges! Today I plan to walk to the parish hall where there is an auction every Thursday (also about a 2 mile round trip) just to see what there is. Usually a bit junky tbh but if you look carefully you can find the odd gem. Its always a bit sad as its house clearance stuff. My best purchase was an old Belfast sink for £1 which is a great addition to the patio with herbs in it! I am looking at buying a few Edwardian scent bottles so am on the look out for them at the moment and I have heard there may be one there today. Also..... have booked a holiday for next May to the Outer Hebrides - I have a great longing to see their beautiful beaches so am really looking forward to it. It will be a restorative week away and also a great opportunity for my husband to get some good photos.
Take care everyone xxx
I have a breast care nurse but to be honest Iv never heard from it seen her since I started my treatment. I have a booklet that my Blood results and dates for next appointments are wrote in. This book also has a section that I can fill in with any side effects and how bad they were in. Everywhere does seem to differ a lot xx
Jumping in if that’s ok as it constantly amazes me on how much treatment can vary. I’ve just had my last docetaxel (had 3 ec, 3 docetaxel on 3 week cycle). I saw the oncologist before I started, I see him again next week to be signed off as I have to go to a different hospital and oncologist for rads. That’s twice altogether.
each cycle I would go for bloods the day before where I was asked how I’d been, ok I’d say, oh thats good was the reply! No specific questions ever. I’d return the next day for treatment. Bloods were never discussed but I did take photos of my results in my notes and at each treatment there was always at least 6 flagged in red, always hb and RBCs.
I didnt/don’t have a chemo nurse I just had to ring the ward if I needed to. No chemo books or cards at all but I did always see the same nurse apart from once as she was on holiday.
still I wasn’t really ill or anything major (although struggled mentally big style) so it did work for me. It’ll be interesting to see how the new place compares.
Hope everyone’s ok.
I get an appointment to see the either the pharmacist and chemo ward sister or my oncologist on the Wednesday before my treatment in the Friday, I also get my bloods taken on the same day. I can discuss anything I’m worried about or side effects that Iv been having and they’ll alter meds if needed and those will be ready for me on the Friday when I get my treatment. I’m assuming if there’s any problems with my bloods they’ll ring and let me know on the Thursday. There hasn’t been up to now 🤞🏽 It is interesting how each hospital does it differently. Iv got my appointment and bloods tomorrow then my 4th and final EC on Friday all being well.
Hi Wolvesgirl and everyone,
It’s an interesting question about how things work in different chemo units. In mine, we have to fill in a detailed form during each cycle (it’s basically a spreadsheet) which lists all possible side effects - we have to state whether we have had them or not, when we have had them, how much they bothered us and what action was taken. We also have to put on the form whether we need any other support (e.g. help at home, counselling etc), and there is a section to fill in about how we have been feeling. We have to submit this form on the morning of the day before treatment when we get our bloods done. The form is reviewed, together with our blood results, on the day before treatment by the chemo nurse we are going to see the next day, and she/he gives us a ring on the afternoon of the day before the treatment if there is something that needs to be discussed that day (e.g. if there are any blood results in the red zone). If all is looking fine for the treatment and on the form, we don’t get a call the day before, but spend the first 20 minutes of the treatment session doing a review of the form and the blood results (and anything else we want to discuss) with the chemo nurse. This is working quite well for me, as it seems to be time-effective and when I arrive for each treatment I feel that the nurse is already well informed about anything I want to discuss. For example, if you have noted on the form that you had a certain side effect and need additional help with it, the nurse will already have discussed this with the pharmacist and/or oncologist and the meds will be brought to you at the end of the treatment. So far I am lucky enough not to have had any significant issues with side effects and my blood results up to now have all been fine, but I know if they are not then I will get a call the day before treatment. If I don’t get the call, i am happy because I know that everything seems to be on target for the following day.
I hope that everyone on the thread is doing well!
Hi Wolvesgirl and everyone
Between each cycle I go into the hospital to see, alternately, either the chemo nurses ("nurse review") or someone in the the Chemo Consultant's team. They have tried to make the appointments on the same day as I go in to give the blood samples prior to each treatment, but that has caused a couple of difficulties as the appointments have been the day before treatment (nurses/consultant on Wednesday then treatment on Thursday). So if the strength of the drugs need to be altered, or there's a problem with my blood, it's all a panic to get it sorted for the next day. As I've had a couple of issues recently, they've now changed the blood samples to two days before... which don't match up with the dates of the clinics - so my next 'nurse review' will be over the phone. During the reviews, I'm just asked about what side effects I've been having and am given advice on how to manage them. I agree, it's really good to keep in touch - the only way I think my experience would be improved is if it was the same person (or couple of people) that reviewed my progress each time... although I do understand that would probably be too difficult to manage from the hospital's viewpoint. xx
Me again. I was just wondering about how units differ in their processes and one of the things I thought about was how often people attend outpatient clinics. Our CNS team either see or phone you between every cycle which I think is excellent - do you all have that? Personally I prefer a call as I feel the less time I spend on the hospital site the better but I am also grateful that they are so good at keeping in touch. Do you have any preference? xx
Dear Julie, Becky and everyone
Julie - So sorry to hear that you had a wasted journey and wasted steroids last week - I can imagine how tricky it is having to rearrange things, like you I pack things into the third week. I am in week two of this cycle now - 12 days post chemo so hopefully coming out of the neutropenic phase now. Must admit, did go to the Harvest Lunch in the village yesterday but didnt mingle too much and was not aware of anyone with a streaming cold! I am now looking forward to a few days of being "me" before my first dose of Docetaxel which I am a bit nervous about! I agree re the injections and timings - its worth trying different times. They do make me feel a bit "off" apart from the pain which has been minimal and if it happens it does right at the end of the seven days. I have actually brought mine forward from 1830 to 1730 and I think that is better but its probably not really that big an adjustment. Definitely best to have in the evening I think - thats what the nurses told me.
Becky - so pleased your first taxane cycle started well - how is it going now that you have finished the steroids? I hate taking them but absolutely understand why we need the higher dose (thanks Blackcat) so am not looking forward to the higher dose. Re the red cheeks - I am going to Boots tomorrow to see the Macmillan Beauty person (on the No7 counter apparently) to see what they can recommend as I don't think I will be on a LGFB course anytime soon. Trying to be proactive here now I am feeling better!
Hope everyone else is good and had a lovely weekend. Its getting very autumnal here now - lots of leaves off the trees and lots and lots of mud on our village lane thanks to the potato fields being harvested. Yuck! xx
Many thanks, Blackcat.
My chemo journey - Herceptin, Perjeta and Docetaxel + Carboplatin - sounds very similar to yours, except that I've been on those 4 drugs since the beginning (will have 6 cycles in total). I was very "excited" (!!) about going last Thursday for my fourth treatment of the same, but when I arrived at the hospital - all psyched up and ready - they told me I couldn't have it as my platelets were still too low. I had to have a blood transfusion after the 3rd treatment for the same reason, but this time they have delayed my next one for a week instead. This is obviously frustrating as my 5th and 6th cycles have also had to be delayed and I'm now having to re-arrange things I've set up for my 'good' week each cycle. I'm finding I really only get the final week each time when I feel capable of going out with friends, but perhaps that's because my body isn't coping too well with making new platelets. I can't wait to get past the 4th treatment as feel I'll then be on the downward run.
I don't know if it's any help, but I've experimented with the timings for the filgrastim injections (I've been having those throughout too) and found the best time for me is between 6pm and 7pm because I can then basically sit down all evening and then go to bed, so the bone aches bother me less. I've only needed pain relief (simple paracetamol) once during the whole 3 cycles so far.
I've also been having the higher dose of steroids throughout - 4 tablets twice daily for the day before, day of chemo, and day after... and then reduced to 2 tablets twice daily for the two days after that. It seems to me the worst side effects kick in once the steroids are out of my system. I have had the red cheeks each time... which was particularly annoying when my last treatment was postponed as I'd already taken the steroids for nothing!
I've had no nail problems whatsoever (so far). My nails still seem strong, although I am moisturising them often... just with basic Nivea cream. My taste issues have been exactly the same as yours... everything tasting like cardboard for 3-4 days doesn't help with trying to eat, does it?!!
The nurses have said all the drugs have a cumulative effect, and I must admit I've been getting more tired (and with worse digestive issues) each time and not really getting back to 'normal' between treatments. I can't imagine what it's going to be like after the 6th and final one - but it will be such a relief to have the chemo part of the treatment over that should raise our spirits!
Good luck everyone, and hopefully I'll be able to report I've had my fourth treatment next time I'm on here. Thank you all for sharing your experiences - it really does help. Julie x
thank you mini mad once again for your reassurance (feel like I’m a broke record) and thank you Becki for letting us know how you got on with your first pax. Glad to here it’s so far so good for you 🤞🏽 I do hope that continues for you. Let me know how your getting on as the week goes on. Hope everyone has a nice weekend.
Thanks so much for sharing your experiences mini mad!
So my first weekly pax was yesterday and, boy, was I nervous... got there and in took at least 3 nurses and 5 stabs to get into my very tender and swollen new port, and I was beginning to fear another week of delays but we got in eventually (yowch!)
But so far a TOTALLY different ball game than EC (which was a real struggle for me), I got a solid night of sleep after and awoke today feeling a bit sluggish but pretty ‘normal’ (normal at the moment is slow and tired but I wasn’t crazy worse than usual) and NO NAUSEA!!!! I was up with the kids for breakfast (unheard of in the first week post EC), did some cleaning whilst they were at dance class and even took them to the cinema this afternoon. My appetite has been huge too! I’m pretty exhausted and flat out on the sofa now with a pile of magazines and don’t plan to move - thank goodness an amazing friend of mine has my girls for a sleepover tonight - but I still feel like ‘me’ (I lost that post EC for some of the days). I suspect things might be worse and the tiredness will really hit once the steroids wear off, and I know all bodies are different, but I’m taking today as a gift, and just wanted to add some hope that a change in meds might not be as bad as the last lot for us all! (and crumbs, EC was a tough ride).
Happy weekends all! Xxx
of course i had days when i felt better....wouldnt call it normal. I found at the beginning that days 3-5 where my worst but i believe that as my body kinda got used to the chemo,
that it became less. So no, hopefully you wont feel wrecked for those 12 weeks.
i found going out for a walk every day with my dog did help. Even if it was a slow plod !! 🚶♀️🚶♀️. The fatigue/tiredness is bad, at least for me...even now 7 weeks after chemo.
on the plus side my hair, eyebrows and eyelashes are making a return...yay.... something so simple can raise ones spirit 💖💖 Dont forget our bodes are all different in the way we handle the chemo so just wait and see.
stay in touch. Mini mad xx 💖💖
hi mini mad
Did you find you had any days when you felt “normal” I think my main concern is not having the couple of weeks of feeling ok in between. Am I going to be wiped out for 12 whole weeks? I’m not expecting it to be a walk in the park Iv just enjoyed having these times of feeling myself in between my treatments.
Hi Blackcat and everyone
Thanks so much for the detailed information Blackcat - its really helpful. I think the advice about the ibuprofen/paracetamol is good - so far on this cycle I haven't had any bone pain with the GCSF but today is day 5 of the injections so it might start soon as it seems to be towards the end it happens. On my first cycle the pain was startling to be honest and I was quite glad that it happened when I was in hospital as it could have been a bit worrying, but they assured me it was completely normal. Last time not so bad so I am thinking maybe my neutrophils did not drop as low so lets see this time. If you can manage without stronger painkillers it is better - anything with codeine in can cause bowel issues and lead to feeling dizzy and sick as my husband has just discovered!
I will try Evonail - my nails are not particularly strong tbh but I want to try and protect them if I can as finally having given up nursing I am able to grow them a bit which is a great treat!
I get what you say about the increased steroids - obviously a standard dose as I have to start 8mg twice a day before the next cycle. I get the red face with the lower dose so I will probably look like a tomato with the bigger one!! I believe that the chances of a reaction during administration is higher with taxane so it makes sense.
I was very envious of you doing the LGFB course - it sounds fantastic. There is a waiting list for LGFB in our area and I am on it - a friend of mine who had chemo about 5 years ago for BC got on it just as she was finishing so I am not hopeful of a place anytime soon but I am awaiting a call!
Taste - that sounds interesting. I have not really experienced too many taste issues this time with the FEC but the nausea is a bit more long lasting but only on a very low level. I have not taken antiemetics since Monday to prevent constipation which in turn causes nausea leading to the cycle continuing. I do fancy certain foods though - strong cheddar being one of them - and cheese crackers.
It sounds like you have managed the side effects and the chemo journey really well and I am so pleased for you. You are right, it has gone quickly - for me, getting number 4 done will be huge as I will be over the "hump" and on the downward slope to the end. Then just radiotherapy to contend with which at the moment is not even on my radar.
Have a good week and keep safe. xxx
Hi Wolvesgirl, Spottycotty and everyone,
I’ve just got back from my second treatment with Herceptin, Perjeta and Docetaxel, which took about 4 four hours because there needs to be a saline flush between each drug infusion, but was much quicker than the marathon session of the initial treatment (9 hours the first day, 4 the next day) when you need to be monitored for adverse reactions for several hours. All went well during the treatment - as in the first cycle, I felt nothing at all during the treatment. The nurses gave me good advice about dealing with the bone pain, which can be caused by Docetaxel but is accentuated by the Zarzio (filgrastim) injections and therefore tends to happen mostly during that part of the cycle. They told me to start taking paracetamol, alternating with ibuprofen, whenever any slight bone pain started after the injections, and to take it in anticipation of bone pain starting on Day 5 (when during the last cycle I was hit by severe pain during the night, having tried to ride out some lesser bone pain during the day). They think that I should be able to manage the pain without being prescribed strong prescription painkillers, as I only really had bad pain twice, but I can ring up for stronger painkillers if needed.
The increased dose of steroids around the time of the Docetaxel treatment is apparently to counter possible adverse effects, and I have found that the high dosage (I have to take 4 tablets twice daily on the day before treatment, day of treatment and day after) has given me a few side effects (bright red burning cheeks and a slight rash on the chest, the inability to sleep/feeling restless, and feeling very hungry). I did not get these with the lower steroid dose when on EC, but apparently they are all quite standard with the higher dose. Indeed, at the LGFB course on Monday, one lady was on the day before treatment and had exactly the same red “steroid cheeks” as I have today. My chemo nurse said today that the dose is very high, but is vital with Docetaxel (so much so that the treatment cannot be given if the patient forgets to take the pre-treatment prescribed dose). So I guess that whatever adverse effects the steroids aim to prevent could be worse than those from the high dose.
I have had taste issues with the Docetaxel on the first cycle - three wonderful days (Day 1-3) when on steroids with all tastebuds normal and functioning, but then a few days with weird/blunted tastebuds (bitter/metallic taste) followed by a couple of days with almost no sense of taste or smell at all, and when I didn’t have much interest in eating (although was not nauseous). Thankfully the third week of the cycle was OK, as I could taste and enjoy most things again.
Docetaxel definitely can cause nail problems, as a gentleman in my treatment room today showed me how it had made several of his nails fall off (but he has a different type of cancer, so perhaps it is not a direct comparison). I having been using Evonail since the start of chemo, and have no nail problems so far (in fact my nails are growing fast and are strong). I have also had no mouth problems at all. One benefit of the Docetaxel is that it has never given me the feeling of a woozy head or headache, and for some reason it has not made me tired (although I know it does in many people). So these have been good things. The digestive unpredictability has for me probably been the most inconvenient side effect, but the nurse today advised me to take the loperamide more regularly as a preventative measure, so I will do that. I think I have learnt quite a bit from the first cycle, and will act on it during this one.
I hope that all moving on to a taxol regime will get on as well as possible with it. It is scary adapting to new side effects, but we are all becoming more experienced at the chemo rollercoaster and will can do it! It is amazing how quickly time is passing - I now just have two cycles to go, and it seems only a moment ago I was terrified at the thought of starting chemo.
Take care everyone, and I hope that you all have a good rest of the week.
yeh i think we have been in touch before.
if you want to ask anything please do.
i've finished my chemo now. 👍👍
mini mad xx 💖💖
Hi mini mad
Thank you! 😘 I think you’ve offered me some reassurance before.
I think my main concerns are 1. the frequency in which it’s given, Iv been having EC every 3 weeks and I’m finding that for a week of that I’m very fuzzy headed and tired but then I have 2 weeks where I’m feeling “normal”. I’m worried about not having that break from it and spending a whole 12 weeks wiped out. 2. A whole new set of side effects to deal with 😳 I’m sure I’ll think of other things to pick your brains about to 😆🙈
thank you so much for offering your advice
I had paclitaxel once a week for 12 weeks.
i finished my treatment 7 weeks ago.
if i can offer any advice pls just ask 💖
lovely to hear from you. Sorry to hear you’ve had a few problems which have delayed your treatment. I’v got my last EC on Friday 18th then I’m moving onto Paclitaxel like you. Please let me know how you get on with it as I’m getting quite anxious about starting a different type of chemo. Feels like your starting all over again doesn’t it?! I’m hoping like you that its correct about the EC being more harsh. Are you having it weekly? Doesn’t give you much time to recover in between 😳
Sorry haven't been on here for a while, but good to read through all your updates and it seems we're all soldiering on! I have had a bit of a hiccup with developing blood clots in my picc line after my fourth EC - gah! So it's had to be whipped out, I'm on lovely blood thinning injections for three months (blinking painful but at least none of the horror side effects of the filgastrim!) and starting paclitaxel was delayed for two weeks until I could get a port fitted (my other arm is out because of ANC and they're worried about cannulating the picc line arm after blood clots). Anyhoo, that's going in tomorrow and weekly pax starts on Friday...
I had really mixed feelings about the two week break, as it pushes my finish point after Christmas, but also I was SO knocked out by EC 4 it has been good to recover a little. It's now 4 weeks since any chemo drugs and I'm feeling pretty good, managed some work and even getting to some yoga classes, but BOY am I exhausted, just made me think about after chemo is done there's a whole lot of recovery time in getting energy back to come...
Anyone else started weekly pax yet? I'm REALLY nervous about Friday - I'm hoping that it's gentler, which is the general guidance I've been given, but I've been doing a good job at side effects bingo so far, so fear I might keep this up and get everything going with pax! Saw the oncology nurse consultant today and she was quite confident I'd be able to work a little around pax, but it's hard to know, last EC had me in the fog for 8 days in the end, so I'm hoping for the best but preparing for the worst! Doing a massive shop and meal plan for the week now to try and get everything in place for when I go under...
Big love to you all and keep on keeping on!
Sounds like things are going OK for our little group - I am now day 6 post FEC - still nauseous but not taking antiemetics as I don't want the constipation that goes with them - managing with fluids and ginger biscuits! Although I still feel rough I am much more positive than I was which has helped and reading your posts really helps with that so thank you all.
Blackcat - sounds like your first cycle of the new regime has gone well - I really hope that continues from this week with your next dose and you continue not to experience side effects to a great degree. I don't know if the bone pain is the drugs or the GCSF - that can be pretty acute - but paracetamol is a good analgesic for it although I accept what you say about being unable to anticipate it during the night. So very pleased you have been able to get out and about more - I am really hoping that will be the case for me next time. I am so sad about the reduction in my fitness since this started - the gym is a distant memory - but I can only look forward to getting it all back again from the New Year.
Spottycotty - well done! No vomiting night one! Again, really pleased that is the case and hope it continues. How are you and Blackcat finding the increased dose of steroids (if that is what you are having - I have been given double the dose to start the day before)? I can't say I like taking them but they seem to work re side effects so they are a necessary evil I think but it makes me wonder about the need for doubling the dose - what are they anticipating??? Fingers crossed for a good recovery. Sleep is good - give into it - its your body telling you it needs it.
Are either of you experiencing taste issues? I believe that can be more of a problem with Docetaxol as can nail issues - have you painted yours?
Lisalou - glad you are OK too and have had time out last weekend. Its our harvest lunch this weekend and as the token village veggie I always have to make a quiche (for me and my husband basically). Its always a nice occasion and I am really looking forward to it.
Keep well everyone, love xxx
Well I have had the first dose of docetaxol yesterday and I can’t believe the difference!!
Ive got through the night without having my head down the freshly bleached toilet or sick bowl!!! 👏👏👏 slept right through till 4.30 so I’m feeling well pleased with myself 🤣
I felt really nauseous at the hospital but I think it’s the smells and the anticipation etc turning my stomach more than this lot of meds.
I came home, washed the conditioner out of my hair from the cold cap and got settled on the sofa.
I’ve felt really tired and slept loads but I can take that, I know it’s early days and there may be a monster lurking round the corner (days 5-9 Blackcat??) but for the time being, I’m enjoying feeling normal ish 👍👍
Really hope everyone is getting on ok too..
ps, the nurse who hurt my arm refused to see me again 😆😆 ... bloody fine by me!!!!
Sorry for late reply wolvesgirl. I have indeed been enjoying these chemo and fuzzy head free days! im 11 days post EC now and feeling pretty good.
Been trying to get out walking as much as I can with my dog and meeting up with friends.
blackcat I’m so glad you managed to get onto the look good feel better workshop, I really can’t recommend it enough to all you other ladies.
Hope everyone’s ok?
big hugs to everyone
Wolvesgirl, well done done for trying to get out and about, it’s so difficult to do things when you have that woozy head isn’t it, I really hated feeling like that... anyway, last one of those so done so onwards and upwards.
Blackcat, the workshop sounds really good, I’ll have to book in when I know when my good days are.
Im having my first docetaxol tomorrow 😩 feel like I’m starting over and I’m a bit unnerved as I don’t know what to expect or what days I’ll be well.
Ive been keeping track of my temperature this week as it’s usually low (35.5 ish) so I thought I’d keep track then I’ll notice if it drops more.
Anyway, we’ve had a lovely weekend away to prepare ourselves for the this week, my brother in law is getting married at Gretna Green on Saturday so I’ll be missing that, daren’t sit in the car for that long after hearing loose stool stories like yours Blackcat!!! Imagine!!!
Anyway, I hope everyone is as well as can be xxxxxx
Hi Wolvesgirl and everyone,
I’m sorry to hear that you had a bad night with nausea, and I hope that you are feeling better now. I think that you are right to be up and doing things, as I found it always helps me too when I am on the worst days of the treatment cycle - every normal task I complete is like a small victory!
I think that there are pros and cons to the new drugs (Docetaxel/Herceptin/Perjeta) in comparison to the EC. On the plus side, it has been good not to have the nausea and the woozy head, but on the minus side the bone pain has been a challenge at times (particularly because twice it kicked in during the night and so I hadn’t taken any medication to anticipate it). However, it was only really an issue on Days 5-9. The Docetaxel has also given me some digestive issues - not actual diarrhoea (which my chemo nurse said was really common), but certainly a speeded up and unpredictable digestive tract, which is inconvenient when you are out. On the new drugs I have not felt tired, and I have just had an excellent few days when I have been out and about doing lots of things (walking in the countryside, having meals out, and just doing normal tasks like taking my cats for the vets for their annual check up/jabs). However tomorrow I am back at the hospital for bloods in preparation for treatment no. 4 on Wednesday, so I will be back at the start of the cycle (and the SEs) soon. This time I am going to ask for some better painkillers for the bone pain, I think, and also for advice about whether to take painkillers in anticipation of it starting.
I have just come back from my Look Good, Feel Better workshop at the hospital, and it was excellent! We were given fabulous goody bags containing about £250 worth of big name cosmetics, skin care products and fragrances, and were shown how to apply them to compensate for some of the issues we face during chemo (e.g. steriod flush on the cheeks, loss of eyebrows, dehydrated skin etc). There were 7 other ladies there, 6 of whom are also going through chemo for breast cancer, and it was a great opportunity to compare experiences and share tips. We all came out looking much more glamorous than when we went in, and feeling much better too, so the workshop definitely lived up to its name. It has also come just at the right moment for me - I was dreading the steroid redness/heat/itchiness on the cheeks which I got on the first Docetaxel cycle (and which I will probably get tomorrow when I take my first dose for the next cycle), but now I have a lovely green (!!) skin treatment which miraculously makes the redness disappear. My eyebrows have also been departing at an alarming rate, but today I was given a product to draw them in, and shown how to do it properly without it looking as if caterpillars have attached themselves to my forehead. So if anyone get the chance to sign up for a LGFB session, I would really recommend it.
I hope that everyone is as well as possible, and send a virtual hug to all on the thread.
Hi Lisalou and everyone
How are you? Lisalou - hope you enjoyed Downton Abbey with your daughter - I am hoping the DVD will be out for Christmas and it will be our film to watch Christmas afternoon. Sounds like its the right kind of feel good factor!
I am OK - day 5 which seems to be my worst - had a bad night with nausea but managed to get it under control and get some sleep though feel a bit spaced out today. However, positive thinking is the way forward so I am up and about and getting on with things rather than moping about like I did last cycle.
Blackcat - how are you getting on with the new drugs? Better or worse than the EC? Take care all xxx
Hope your feeling ok after your latest treatment?!
I’m slowly feeling like I’m back in the land of the living (day7) stomachs a bit tender today though.
Hoping to get out tonight to watch downtown abbey with my daughter so just having a chilled out day.
Hope everyone’s ok.
So, third and final FEC administered today and now doing it worst (I hope) to any random cancer cells that might be floating around. Determined to keep positive and crack on through the Docetaxil - I am assured that nausea not so bad with it which is a massive bonus. Also only 20 mins of cold cap after treatment compared to 1.5 hours with FEC.
Hope you are all well at your various points of treatment and keeping dry in this weather. We live close to the Severn (not at risk of flooding though) and it’s very high at the moment! xxx