A mixed response to treatment seems to be the order of the week this week but everyone seems to be remaining positive which is fantastic - well done ladies you are coping well and you will all give this BC a kick in the butt
Rose - I'm sorry but I cant help you regarding tests throughout treatment - since my wle's the only tests I have had is the blood test you have just before your chemo. I understand how frustrated you are when you are told to expect some tests/treatments in a certain time frame only for them not to materialise, it's very testing on the anxieties, I hope you get the answers you need very soon. Glad to hear you're starting to feel a bit better in yourself and the side effects are easing a bit - I hope I haven't spoken too soon. You're doing great and I'm sure your strength of spirit and determination will get you through, I really hope the side effects start to lessen for you, you've had a rough time but on the positive, each week brings you closer to ringing that bell.
SP - It's good to hear your side effects are less than they were on the EC. Must admit I don't like the dark nail varnish but I use black and dark pink on alternate nails and use multi coloured glitter varnish over the black polish and a white and blue glitter polish over the dark pink - sounds terrible but its much more bearable than plain dark coloured on each nail. I wish I could take credit for thinking of it but it was my 15 yr old daughter who said it would look good and I'm surprised at how good it does look; sometimes I also add some nail art stickers. It used to provide a focus for something to chat about during chemo, it was refreshing to have something other than chemo to talk about. I hope your neutrophils sort themselves out and you can have your treatment, that bell is tantalisingly close now, I'm keeping my fingers crossed for you.
Sewbuddy - Oh my goodness you really are being put through the mill but are managing to meet the challenge head on, the fact that you remain positive is helping you through, along with your determination to finish your treatment. I'm rooting for you, hopefully you will be able to go home on Monday. Funny isn't it, your granddaughter is 16 three weeks before my daughter, yet mine doesn't take her GCSE's until next year. I hope your granddaughter gets the grades she wants so she can do whatever it is she wants to do next. It's a bit of a nerve wrecking time but no matter what she will meet the challenge head on - how can she not with a grandmother with so much strength, determination and positivity as yourself.
Dezee - I'm looking forward to the eyebrow demo, mine fell out although I have a little regrowth now but they are coming back grey so are difficult to see so the tips should really help. Strangely up to now I have kept my eyelashes and they haven't thinned. Yes I am pleased and relieved for my son and it has been interesting watching him virtual networking with his new course mates, they'll know each other inside out before they actually meet, all this virtual stuff is still a bit alien to me, I still prefer the face to face contact that I was brought up with, I suppose that's a generational thing. I had the zolendronic acid infusions along with my chemo but my Onc told me at my first appointment that I would be moved onto the tablets once chemo had finished - it was right as I'd forgotten about it until I was given a prescription for it at my final chemo session. I was advised that if I needed invasive dental treatment I needed to stop the tablets for 6 weeks before then for a further 6 weeks following. I don't really know what you would do if you were having the infusions, either way I pray I don't need any treatment for the next 3 years.
I hope you have a great time at the seaside too - it looks as if the weather forecast is favourable for us both.
Keep going ladies, everyone will soon be ringing that bell
A little bit late with replies but I hope you are all doing well at the meoment.
Joemic - I really enjoyed my LGFB course last Wednesday. So nice to have something positive to do. The best product/advice was for eyebrows, and I wouldn't normally emphasise them when doing makeup, but they are faded and half are missing so that made a significant difference. The instructor mentioned that there are serums you can use once chemo is finished which boost regrowth of eyelashes. I hope that you enjoy your session as much, particularly the bag of goodies you get. I have even had a compliment from from my hairdresser since using the new products. Your son did very well in his exams, you must be so pleased and glad the stress of waiting is over, particularly as the new A levels are so much more challenging than the old ones. I am also off to the seaside too on 24th (Dartmouth, Devon). The sea air really does wonders for your mood. I hope the weather is kind for your trip away.
It does sound that you haven't seen much of your oncologist. I had a 45 min appointment at the start of chemo, a phone call with results of the first CT scan, another 30 min appointment after the
SP - so glad to hear that NAB paclitaxol is going well with no real SEs. I haven't bothered with dark nail polish or cold mitts and gloves for paclitaxol. After 3 treatments no neuropathy, palm blotches or nail discolouration, no mouth ulcers until this week, but an ulcer/ soreness on my tongue and roof of mouth.
Mangomum - just reading about your trip to Alton Towers with your children made me feel tired! I don't know about anyone else, but the odd trip out clothes shopping is exhausting. I don't whether it is the crowds, pressure of trying to find something that looks half decent when you are going through treatment, or (as happened to me) I forgot my water and felt very dehydrated. I wondr whether I will continue to drink 2 litres plus each day after chemo.
Jencat - I hope your mammogram goes well on Tuesday. It is so much harder when you have no control and have to play the waiting game. I am also on zolodronic acid and have my second infusion on Tuesday: a little bit achy but that's all.
Rose2020 - what a tough time you have had with the docetaxol. For me EC was definitely worse than carboplatin/paclitaxol. I hope your next one is kinder to you and maybe you don't have too many more to endure?
Sewbuddy- so sorry to hear you are in hospital with an infection. It must be galling when you are so close to the end of treatment. Get well soon and I hope get home quickly.
So sorry to hear you are in hospital. You have been so unlucky with infections.Keeping everything crossed for you that you get out on Monday to celebrate with your granddaughter. Keep strong!
Love Rose xx🧡
Mangomum and Dezee, thank you so much for asking how I am. I finished chemo in March last year and rads last June, but I go back to the chemo unit every 6mths for an infusion of Zoldronic Acid. I'm feeling a bit anxious at the moment as I see my consultant next Tuesday for the results of my 2nd mammogram since I was diagnosed xx
Good evening everyone,
This is my third attempt to post 😂 Having read through the thread it seems that many of us are approaching milestones of some sort. Bringing on some new worries etc. We have all come such a long way since our journey began, we know we can handle these anxieties and soldier through to our next stage, be it a change in drugs, some half way tests or moving on to rads or surgery, once we have the plan in place we feel better.
It's great to hear about your short breaks and family news with proud moments and occasions to look forward to, I believe it is these occasions that carry us through.
My 2nd dose Dosetaxel was reduced to 80%again but still completely wiped me out from day 2 again with intense pains in my feet and legs that prescription painkillers barely controlled. Then the fatigue hits!
My family all get together once a year for a massive picnic in the park, there were 50 of us and I was taken along and sat in a chair and loved being amongst my nearest and dearest. The next day I had my LGFB session which was great, I started to think I was almost through the worst, when I spiked a temperature and I've been in hospital now since Monday. IV Tazocin 4 times a day and 2litres of fluids a day. Culture's show nothing but I'm still spiking 2-3 times a day. It's so frustrating😩😩 I fear my last chemo will be cancelled now. On the positive side I have my granddaughters 16th birthday this week and her GCSE results day too xx. I'm hoping to be going home Monday all fixed and ready to celebrate with her🤞🤞🤞🤞
Good luck with your milestones everyone - wishing everyone all the best
I'm glad to hear that most of you are coping with your treatment regimes and even managing to combine this with some normal living!! Well done everyone!!
I have just had my 4th dose of weekly NAB Paclitaxol today. I feel like a pin cushion!! It is going ok in terms of side effects. So far, they are much milder than the big doses of EC. I have not needed any anti sickness meds and have only had three antacid capsules each week. My stomach is delicate for 2 days but no volcano type symptoms. I’ve managed to walk 3-4 miles on most days. My mouth is tingly but ok. My fingers and toes are ok too but I’m massaging my nails with cuticle balm every day, as well as wearing the dark nail polish (which I hate!!) I’m also wearing the cold mitts and slippers during chemo. So far so good....
I have 2 Filgrastim injections each week but even with this, my neutrophil count has dropped very low.
Last week it was borderline for proceeding with Chemo. Today it was 1.2. If it drops further this week, I think my treatment will be delayed....very frustrating because in myself I actually feel ok!!
So, next week, I am half way through the weekly regimen...five treatments left to ringing that bell!!
Thank you so much Rose for your reply. That is really helpful. I will definitely make sure I get some Imodium. They have told me that I will be in for 6 hours for my Perjeta and Herceptin and that I will have to go back the next day for the Docetaxil. I have read on other posts about the sore mouth and several people have mentioned asked for Difflam mouth wash. It sounds like it works really well. I have a stash of tinned custard though incase I need it! I will definitely let you know how I get on. Hope you have a good few days before your next treatment. Thank you so much again for your reply. Xx
I had my first Docetaxel, Perjeta and Herceptin the Tuesday before last. It was a long day in the unit as they need to leave an hour between each infusion to monitor for side effects but it all went in without any problems! I felt really well until the Saturday then I started feeling achey and really tired it lasted 2 or 3 days and I felt like I had flu I just used regular paracetamol and ibuprofen and they did help. I also got diarrhoea and felt a bit sick so I used the metaclopramide I'd been given to come home with and Immodium for the diarrhoea which did stop it quite quickly I just wish I'd started taking it as soon as it started! The other things I've had this time were a sore mouth and complete loss of appetite - I've been using salt water mouth washes and my mouth is improving and my appetite is coming back although I can still only eat soft foods!
For the next one I plan to ask the nurses if they can suggest anything else to stop my mouth getting so sore and I will use the Immodium as soon as the diarrhoea starts as I waited a few days this time before ringing for advice.
You are so right that everyone is different though and I really hope you get minimal side effects but its definitely worth being prepared for everything and stocking up in advance also ringing your unit if you're not sure. Good luck and let us know how you get on! Take care
Love Rose 🧡
Hi Rose, I am from the July starters but am having my first docetaxol together with herceptin and perjeta in 3 weeks time. Please can I ask what you have stocked up on to cope? I am not looking forward to it. Also are you feeling better now and if so how long did it take? I know everyone is different but am trying my best to prepare. Thank you so much. Xx
Hope everyone is coping ok at the moment. There's always something to be trying to manage or worrying about during this chemo business isn't there?
Just a quick question about echocardiograms? Did everyone have one half way through their chemo? I had one at the beginning and was told by the oncologist I would need one half way through then at the end. I've got an appointment for the midway one but it isn't until after my 7th treatment - I rang the chemo unit yesterday but no one seemed to know if that was ok or if it would mean delaying my next treatment if it wasnt done, they said they'd ring back but hav'nt as yet I'll keep chasing it but just wondered if anyone knew what the rules were!
I'm finally staring to feel human again after my first Docetaxol last week the aches, sore mouth, disrrhoea and loss of appetite all kicked in 4 days after and caught me quite off guard as I thought I was going to have an easier time than the EC but it wasnt to be!! My medicine cabinet has never been so well stocked with all the pills potions and lotions I'm buying to try and help me cope.
Joemic well done to your eldest on such great A levels and getting to Uni! And enjoy your seaside break.
Take care all here's hoping for a relaxing stress free weekend for everyone
Love Rose 🧡
I hope everyone is managing their cycles with minimal side effects.
Dezee - I had my 2nd WLE at end of Feb and didn't start Chemo until last Friday April, (2 months), my Onc didn't appreciate it when I mentioned the NICE guidelines to her but as I said I was concerned with my life not her patient numbers, I suppose I could have put it a little more diplomatic but by that point diplomacy was the last thing on my mind. Strange isn't it how some people are told what stage they are and others aren't, it would be so much easier if everything was standard regarding stage.
You're right I do tend to over think things at times but for me unless I 'voice' my frustrations and concerns I find it hard to move on. Since posting I have reconciled myself and am back to my usual positive self, luckily I don't stay down for very long and usually bounce back quite quickly but thankyou for taking the time to reply to me, it is appreciated. How did your Look Good, Feel Good course go? I hope you managed to get the tips for your hair, eyebrows and eyelashes and found it useful - I have mine booked for the 20th, we'll have to swap notes. I've also got a couple of nights away at the seaside booked - I love the sea and the smell of it. I'm taking my daughter as she wants to meet up with her friend who lives near where we will be staying. Although we will be at the hotel at night together I will be on my own during the day and I am so looking forward to having the break and a bit of R&R and just looking after me - hubby will be staying at home looking after the 2 boys as they have other things planned.
Mangomum - 3 days at Alton Towers! no wonder you're shattered - that's a tiring trip even when you're not go through Chemo. I hope your 5th cycle was kinder to you than the others and the meds worked for you. No I'm not in Buckinghamshire, I'm a Yorkshire girl but it's nice to know that the different trusts go by NICE's guidelines!! without being pushed (I do mean this ironically). I had my reviews with the chemo nurses, I saw my Onc on my 1st review and for all of a 4 minute review on my 5th but at least I suppose I saw her twice - I think the next time I see her will be at the 6 week review after the end of radio, so sometime Nov/Dec I suppose.
My eldest managed to get 1xA, 2xB's plus an A for his EPQ - all that angst but he's got the uni and course he wanted - the extra year at school did him good, so relieved and proud of him - I'll have to remind myself of that when I'm bankrupt from getting him through uni.
Hope everyone else is managing.
Hi lovely ladies,
Sorry I haven't caught up with everything but getting there. With the new drug /sore throat poss tonsillitis and 3 day trip with kids to Alton Towers I've barely had a spare moment! Round 5 tomorrow and really not looking foward to it. I did get some stronger pain killers at my review and some daily antihistamines so fingers crossed.
Joemic I'm so pleased it's over for you but understand how you feel about unanswered questions. I've a few myself and your trust / hospital sounds similar to mine (your not in Buckinghamshire are you?). I had to push to get my chemo started within the Nice guidelines of 60 days and I've only had appointments with the Registrar so never met my actual oncologist 🙄. I think all my angst will come out too once the chemo is over as I have definitely been bottling up my frustration - but knowing its not the front line staffs fault I've not said anything.
Dezee I really hope that lump gets the slaying it deserves now and you can start to feel reassured things are moving in the right direction and you stay neuropathy free and for the wedding. I've ordered some magnetic eyelashe and an eyebrow tattoo as mine have thinned now and I'm finding my eyes are more sore and weepy with less lashes 😕. Let us know how the course goes? I've booked one for the middle of September as it's at Oxford where I'll have my radiotherapy so two birds. I definitely look worse on the Docetaxel.
Ruthgr I hope all continues to go to plan for you too and the side effects are manageable on the placitaxol.
Docetaxel girls, jencat and lovehunny how are you doing? Are the side effects easing? I've definitely been more tired and haven't got my energy back so well but I have been doing more too!
If I've missed anything I'm still reading through so will catch this week as won't be doing much for a week if it's a thing like last time!
Chemo still going well- now finished my 3rd paclitaxol, so back to the bigger 3 drug chemo treatment next week. No neuropathy, I wonder of it is the piriton infusion that is doing it. Although I was disappointed that my tumour hadn't shrunk much at the ultrasound scan, it has now got smaller since the new treatment. I can't remember who mentioned that the tumour might have hollowed out but it feels further from the surface as well as less hard. I am going to the 'ook good , feel better session at my hospital tomorrow, which should be fun. I now have a wedding on 7th Sept so hoping I will get some tips on hair, eyebrows and eyelashes.
Ruthgr - how are your paclitaxol treatments going? I haven't any aches and pains, just the general aches from the injections.
Those of you on docetaxol, Jencat, Mangomum and Ilovehunny I am sorry that you have suffered from so much tiredness and achiness. Does pain relief help at all? Is the chemo end in sight?
Joemic- you have reached a significant milestone finishing chemo. My onc said I would need a month to recover. I hope your wait is no longer than 6 weeks. Like you, I was only given the grade (3) and not the stage, but am assuming I am stage 2 as it doesn't appear to have spread to lymph nodes. I also had to wait a long time before chemo started 23 April diagnosis to 27th May. Surely this is probably a more critical time than the wait between chemo and radiotherapy? I think you know you might be over thinking things as you recover, do you have anything you could plan which has nothing to do with treatment? It might help to refocus your mind on life after radiotherapy. You've had a really rough time during chemo and have done so well to get through it, so you need to be kind to yourself now while there is a lull in treatment, you deserve it!
I'm back as promised, got over my little temper tantrum when I lost my post, it is a bit soul destroying though, spending ages typing on my phone then losing it in the space of a second, hopefully it wont happen now I'm using my chromebook, don't like the emojis though.
Anyway, the last dose has had me totally wiped out and no energy, I think it's probably a combination of the chemo and the relief that it was my last one. I've got a heck of a bruise this time - and they used my good arm, apparently the cording to my veins in my left arm was going to make it too difficult to get the chemo in even though the phlebitis has gone. I'm just hoping this arm doesn't do the same, I guess I'll find out in the next 2 weeks.
I'm still feeling a bit frustrated that I still don't know what stage I had/have, I don't suppose it would make any difference to the treatment I was given but I would still like to know. I asked again at my last review and the chemo nurse doing the review was a bit evasive, when I pressed her she said oh it says you're grade 3, er yes that part I already knew but grade isn't the same as stage. I seem to think (but cant be 100% certain) that at my very first appointment they said to ignore the booklet they give where it mentions stage because they don't go by that anymore but it seems to me that the vast majority of people are given a stage so don't know why I should be any different. I suppose there are things annoying me now which I didn't have the energy to bother about before.
I've to wait for my radio planning on 6th sept before I find out when it actually starts, the chemo nurse wasn't sure about that either, I think she was a bit uncomfortable because I said it'll be 4 weeks after my last chemo before the CT planning scan and then possibly another 2 weeks after that before radio actually starts which I think is longer than NICE guidelines, she said she'd check with the onc which is fine but I don't see anyone until the 6th. I suppose this is where the anxieties kick in again - I was beyond the guidelines for chemo starting and then I'll be beyond radio ones, it does mess with your head a bit though.
I've been given Ibandronate and Letrozole to start 2-3 weeks following my last chemo so am now trying to decide which one I should take at 2 weeks and which one on the 3rd week as I don't want to start them both at the exact same time as I won't know what side effect is from which meds. I guess it was easier on chemo in that that was all I was focused on and now I seem to have lots to think about again
Anyway enough of the boring stuff about me
Ruth - I'm glad you had a brilliant time away, although you found it tiring I bet it did wonders in lifting your spirits - all good for the soul. Hot flushes, yuk- I'm not looking forward to having them again
Ilovehunny - I'm pleased the cold cap has been working for you. I'm sorry to hear that you are having some nasty chemo side effects, I do hope they start to improve for you, it is difficult when that sledgehammer hits but on the positive as every week goes by you are nearer the finishing line. As for replying individually to people, I'd never be able to remember what had been said if I didn't go on my chromebook where it lets me reply to one but also lets me view the whole discussion on another tab, chemo brain runs wild with us all.
Rose - 3 new treatments, phew, I'm pleased they went to plan. That's a lot at once, you must've been a bit apprehensive but well done you for getting through it and you deserved a very lazy weekend, I hope you enjoyed it and the achey bones and muscles have calmed down now.
Dezee - I hope you have had a few more decent nights sleep and your treatment is going better and not as tough as it has been for you.
Sewbuddy - I hope your no 5 went better than your previous cycles and you're marching on to your last one. I also hope that you are finding it a bit easier now you have stopped work for a while. It's tough to start with, but you do finally realise its for the best and you can put your energies into dealing with the chemo and it's effects and very soon you'll be looking forward to going back again.
SP - I hope your treatment is still going well, you are marching on to that finishing line and will be there before you know it.
Bananabrain - I hope you finally managed to decide what to get for your chemo staff, I just got them a load of mints either they could have them or they could use them as a stash for people who forget theirs when they're having chemo to stop that metallic taste.
My best wishes to everyone else having treatment, I hope side effects are kept to a minimum, you've got this ladies
Well done Joemic on getting to your last treatment! I hope the last lot of side effects pass very quickly then its onwards and upwards!
Nice to hear from you I love honey. I've also just started the Docetaxel. It was a long day on Tuesday as I had three new treatments but it all went to plan with no reactions. I had a few really good days with none of the churning stomach constipation and loss of appetite I had with the EC but then the tiredness achey bones and muscles have kicked in so I'm just planning a very lazy weekend to get through it! My periods had stopped about a year before my diagnosis so at least I don't have that to cope with but I still get quite a lot of hot flushes I feel I'm always sticking a thermometer in my mouth checking if it's just a flush or a real temperature!! The other new thing I've noticed is that with the Docetaxel the breast with the cancer is quite tender I'm hoping that's all those nasty cells getting zapped!
Well take care everyone keep dry this weekend!!
Love Rose x
I have just spent an hour and half replying to you all individually and lost the post😡😡😡😡😡
I've finished my last cycle🙆♀️ glad i'm finally done with the 6 cycles of the red devil.
I hope everyone is doing as well as you can. All that concentration has wiped me out so when I've picked up again and got over my temper tantrum I will post again😊
It sounds like you have had a tough time on Docetaxol, was this the 5th of 6? Good news about your hair, I’m glad this has lasted.
I haven’t had a period since my second cycle, and I am starting to get hot flushes now, so assuming menopause has started, but I think the treatment will mess up your cycle, having periods on top of side effects is an extra challenge you can do without 🙄.....I keep thinking when all this is over nothing at work will feel ‘challenging’ again!!!
I hope this is your penultimate treatment and you only have one left, and you don’t get the drop after the steroids this time.
I have just been catching up on your posts as I haven’t been on for a few weeks. I’ve just had my 5th cycle of chemo and I’m feeling ok. This is my second Docetaxel and it has been very different to the three cycles of FEC that I had to begin with.
I would say say that the biggest difference is pain and fatigue. I felt great initially but soon realised that the steroids were keeping me up and as soon as those finished I felt very tired and achy. I kept an eye on my temperature and took paracetamol and ibuprofen for the pain as it was disturbing my sleep. About a week after I got a temperature and was admitted for one night but they couldn’t find out what was causing it. Spent one night on IV antibiotics and then sent home with a week’s worth as a precaution. I have one injection to boost my white blood cells 24 hours after chemo and I would say that starts to kick in around 10 days later- I had quite a bit of pain in my joints and lower legs this time which was quite bad.
I’m hoping that this cycle will be ok but something I’ve learned is that you never know what you’re in for. I’ve realised that the pattern for me is that I feel ok for the first few days and then it hits me like a sledgehammer for the next 3-4 days. It has definitely taken me longer to get over this time and I’ve been feeling a lot more tired.
I’ve persevered with the cold cap and apart from a thin bit on the top it’s bearing up ok.
Something that has happened this time is that I’ve had two periods close together-about 10 days apart. I’ve told my nurse and she said this can happen. I’m in my early forties so not quite menopausal so it’s a bit strange but I’m told that chemo can do weird things to your cycle. Has anyone else had something similar?
Also, I wanted to apologise for not responding to individuals on the forum as many of you do. My memory is useless at the best of times and it’s even worse now since going through chemo!
Anyway, I hope you’re all bearing up as well as you can be.
Thinking of you,
I love honey
I think today is planned for your last treatment Joemic....I really hope it goes ahead and you do not suffer with it. Good Luck 😘
I hope everyone is coping well, I am just catching up since a few days away, which was brilliant but tiring.
Dezee...my oncologist told me (prior to my scan) that sometimes the lump might not change in size but the treatment has hollowed it, he described it is an empty bees nest, but they will only be able to confirm once it has been removed.
Lots of of love and hugs 🤗 to all
There have been some very encouraging reports where you weekly chemo ladies are tolerating your chemo much better than expected👏🏻way to go ladies you're doing great🤗.
Don't worry Rose and Dezee, some of us might be coming up to our last cycle but we'll still be with you both all the way😁, nobody gets left behind and we'll all be here cheering🙆♀️ until the last person rings that🛎.
I've got my radiology CT planning session through for 6th Sept then who knows when the sessions start, I think i've been a bit niave in thinking that would have been a bit earlier so it could start end aug beginning sept, well that's what the on oncologist led me to believe. Never mind someone will enlighten me at some point🙄
I hope you are all doing well with your treatments and especially those who have been struggling with some nasty side effects. Keep going ladies you are 💪💪💪
Thank you for your positive message, particularly as you yourself are about to embark on a major chemo session. In fact now I am off the injections and steroids I have had 2 decent nights so am feeling a bit more positive. Although some of the early starters are finishing chemo I’ll be with you on your chemo journey until late October (5 months of chemo) if it plays out to the end. The very best of luck today and I hope Peaky Blinders and your book keep you going too👍👍. Remember it’s one closer to the end.
Hello ladies 😊
Lovely to catch up on all your news.
Dezee - it sounds like you are having a tough time after your treatment. I find the lack of sleep and tiredness hits me like that, feeling worried and doubting everything. It is positive news that you have had a reduction in size of any amount and it is the combination of the two regimes that will show the effects that's the reason my oncologist said she wouldn't scan again until just before the last treatment. I hope tomorrows treatment is a lot kinder to you 🤞
Sewbuddy - I'm glad you have finally had a few days feeling well, you have had such a tough time of it with infections, pain, neuropathy and losing your nails. I do hope your next treatments go to plan and that being off work now will mean you can concentrate 100% on looking after yourself. Goodluck for tomorrow 🤞
SP- great news that your hair is starting to grow back and you are having manageable side effects on the weekly regime. You have spurred me on again mentioning your smoothies I've been doing fruit ones but from tomorrow I'm going to add in some "green stuff"every day too as I still really struggle with the veg.
Joemic and Bannanabrain- its lovely to hear you both sounding so positive and coming to the end of the chemo part of treatment. Good Luck with the present buying and enjoy ringing that bell!
Ruth- hope you're enjoying your time away? I had a couple of nights away in Scotland last week and it definitely raised my spirits!
Mangomum, Mominette, Louise, ilovehunny and any other May 2018 starters I've missed!- hope you are all well and finding ways to get through this part of our treatments I know it helps me feel better knowing people are on their last treatments even if it is tinged with a bit of envy!! We will all get there!!
It's my first Docetaxel, Perjeta and Hercepin tomorrow so started the steroids today and had bloods done. They said to expect to be in for 6-8 hours as the treatments need to be given much slower than the EC and they needs gaps between to monitor for reactions. I've downloaded a new recommended book " In the days of rain by Rebeccca Stott " and the first 2 episodes of Peaky Blinders that I've been meaning to start watching forever!! I'm hoping they will help pass the time and that I'm lucky with the possible reactions they said they might have to slow the treatments down even more if that happens!
Good luck to everyone this week whether its treatments or side effects you are coping with. We are all one day closer to getting to the end of chemo!
Love Rose 😊🧡
Hello ladies 😊
Lovely to catch up on all your news.
Dezee - it sounds like you are having tough time after your treatment. I find the lack of sleep and tiredness hits me like that, feeling worried and doubting everything. It is positive news that you have had a reduction in size of any amount and it I'd the combination of the two regimes that will show the
I hope you all had a good weekend.
Thank you Sewbuddy for your words of encouragement. My scan results from last week have been keeping me awake thinking ‘is the chemo making any difference?’ I hope your next chemo goes well although you are not really looking forward to it. You are now so close to finishing this stage. You have really done so well to have carried on working so far, but time to recover from treatment is vital and not a luxury. It is lovely to read that your hair is already coming back too.
SP - great to hear that you are coping so well with NAB packitaxel. I thought I was doing really well early after my first carboplatin/ paclitaxel last week, but because I am on a 12 weekly regime it has meant taking antisickness, steroids and immune injections together on 3 consecutive days, which completely messed up getting any proper sleep since last Thursday night and ironically left me very tired. I wonder if the chemo without the extra drugs to counteract SEs would have been as bad! I too have had mild bone ache. I am in for my 2nd paclitaxel tomorrow (without carboplatin) so hoping no steroids this week🤞🏻🤞🏻. Then CT scan tomorrow afternoon. It would be good to get a bit of positive info from that but have to wait 2 more weeks before I see my oncologist.
Good morning everyone,
I hope you all managed some good times over the weekend. A gift for the Chemo team is such a lovely idea. There is a beautiful ornament on the reception window sill that someone had made for the team, I notice it every time. I too will be finished in 3 -4 weeks at the chemo unit so will also give it some thought xx
Dezee I was sorry to hear your tumour hadn't had a dramatic reduction but it is definitely moving in the right direction and as the onc said it could be changing in structure before reducing, you had lots of other positives too which is great. Ill keep my fingers crossed that there is no lymph node involvement xx Hopefully your side effects have continued to be mild.
Joemic it must feel great to be approaching your last chemo! What are the next steps for you? Thank goodness your phlebitis has cleared up. How strange that your nails are growing strong! Mine are definitely suffering with a pitted look on the lower part of the nail bed.
SP Sounds like you are coping really well with your weekly doses of chemo - fingers crossed these milder side effects continue for you. You really have done so well with your attention to your health and well being too - it is so easy to feel sorry for yourself in these situations and give in to an unhealthy comfort food regime! And your hair regrowing is great news, lets hope it continues - I think mine is too strangely
Since being discharged from hospital it took me a while to recover from 6 days in bed, but I have had a great weekend feeling (almost) normal. I saw my oncologist on Thursday and she offered to delay the next chemo for me to fully recover from my infection. I really didn't want a delay, I have my sights set on a holiday in October! So she agreed to let it go ahead but on a reduced dose again. If I get another infection she will cancel my last chemo - mixed emotions on this, but she assured me that it will not effect my recurrence stats. She advised that the neuropathy damage to my feet may take up to two years to repair itself but is hopeful I will regain full feeling etc.As for my nails, I have lost one toenail, another is hanging off and a third is now going black. My fingernails have changed texture and my thumb, first and middle fingers on my right hand are very tender. I will ask about the cold gloves and slippers at chemo tomorrow! I had really intense pain in my heels and ankles last time, I had to use a walking stick at work and try to sit down as much as possible. Coupled with the fatigue this was so difficult. So I have signed off sick now until the end of my treatment in September. Instead of hobbling around I will just lay down until it passes this time!
In hospital I was getting awful pains in my back and hips, I had a visit from the oncology team and they said it was the injections to boost my immune system. The next day my doctor on the ward told me my WBC was 40 and Neutrophils were 5 - so they stopped the injections, this hadn't happened before.
The other change I have noticed is my hair growing back?? I lost at least half of my hair on day 16 of my first chemo. So I shaved my head. After the next round of chemo I was left with only a couple of patches of frizz that I decided to close shave, these have continued to grow and I have kept my head shaved every couple of day to avoid the velcro effect on my pillow! but I have noticed that my bald patches have now started to grow too, how strange. No more shaving now.
Chemo 5 of 6 is tomorrow - I am kind of dreading it as the side effects last time were so severe but I am also excited to be able to say 'just one more to go!'
There are a couple of ladies that are on the same regime as me that we have not heard from for a while - I do hope that their side effects have not been too bad xx
Good luck to everyone having Chemo this week - the end is in sight ! And those recovering - hang in there we know these side effects are time limited -they will pass soon xx
Good morning all
I hope this posts, we are away for a couple of days and the signal isn’t great.
SP, I am so pleased to hear that you are having minimal side effects, it is such a relief and allowing you to carry on doing what you enjoy and keeping fit. How brilliant about your hair, is it too soon to tell if it looks similar to before treatment?
sending lots of love too all
I thought I would post an update of my progress since starting the weekly NAB Paclitaxol.
I’ve now had two doses and I have to say that the side effects are much milder compared to the three weekly regime!!!
I don’t have to have any steroids or anti sickness meds before of after....so this is a real positive as I’m much less drowsy after the treatment. I’ve had some back and leg ache but it’s been mild and it certainly hasn’t stopped me walking 3/4 miles a day!!! My mouth has tingled for a couple of days post chemo ( so I’m doing salt water mouthwashes on these days) and my stomach is delicate so I have taken antacids - I feel full most of the time, like I’m slow to digest any food? I suppose my poor stomach is taking a beating with each dose so I’m being kind to it!! Apart from these symptoms, I’ve felt ok!!! So far, so good!!
So what extras am I doing to help myself?? (Just in case some of this helps anyone?)
Well, I’m wearing the dreaded dark nail polish and massaging cuticle balm into my nail beds twice a day. I also put the cuticle balm on my fingers when I get in bed and then wear silk moisture gloves (from Amazon) so it doesn’t rub off all over the bedding. I’ve done this now for 3 months!!! I believe it is helping to keep my nails in good condition? I am also wearing the cold mitts and slippers during each chemo and so far, my fingers and toes are fine with no neuropathy or nail loss so I can still play my piano!! I’m also drinking a green smoothie each day to raise my antioxidants as I’m told this helps the body to cope with the chemotherapy. I make the smoothie in the morning and then drink some before breakfast but then keep some to drink before lunch and also tea....that way, I don’t feel yuk when I drink it!
The most surprising news is that my hair is regrowing!! I’m astonished as I was told it wouldn’t grow until chemo was done? It is still possible that the new drug could zap it but my chemo nurse says it might not?! At the moment, it is like baby down but it is definitely growing fast!!! My husband is now calling me “Fluffy”.....but it’s a start?
I hope you all cope with your week and whatever it may bring. Stay strong!!! I can now see that the end is in sight!!!
Dear Joemic and Bananabrain,
great news that you are finally reaching the end of your chemo and getting ready for the next stage! 🎉🎉How brave and strong you have been. It’s lovely that you are thanking the caring and thoughtful bc staff/ wards. During my 3rd chemo one of the nurses told me she and her colleagues asked if they could try the look good feel better nights, so they could get an insight into what patients experience , but no chance. She told me that they had a few recent cases that staff found upsetting. I hadn’t quite appreciated how they might be affected by their job. I have a bit more time left to think about a suitable thank you, but homemade cake, chocolate or biscuits sound good and a permanent remembrance in terms of a patio for future patients, even better. There seem to be a lot of us in the teaching profession. I know as a teacher, even a personal message in a card can be quite emotional to receive- you really feel you have made a difference. It is the thought that counts😁😁.
Hi May ladies😊
Oh how time flies and stands still at the same time, if you know what I mean. Bananabrain like you I will shortly be coming to an end for this part of my journey - 🤞next Friday will be my 6th and final EC🙆♀️. Desperately hoping nothing stops it.
I'm going to give my chemo unit a card, it's a big unit. I have already donated over £100 with the help of my work colleagues, they are putting it towards the development of a patio garden for the benefit of future patients, which I think is going to be great for them😊.
My phlebitis has now gone only a few sore veins now👏🏻. One thing I have noticed is how long my fingernails are, well long for me😁, they seem to be growing like billyo, it's the first time I've had nails in over 35 years and can't believe how awkward it is to type, I keep hitting the wrong keys🤣, it's taking ages to type this😬. I'd best enjoy the nail painting now cos they'll be cut down when I return to work, I can't bear to think I might accidentally scratch the people I work with.
Any way ladies I'll personalise my reply to you all when I log onto my chrome book as it's got bigger keys and is easier to edit mistakes although the emojis are not as good🙄.
Until then keep well and best wishes for all on weekly treatment this week, I hope it is kind to you. And for everyone else I hope treatments are going well with minimal side effects....Keep going everyone, we'll all get there in the end🤗
Glad I could be of some help Bananabrain Until this Summer, I worked as a teacher (I've just retired!) and agree, you can never have too much chocolate! I'm enjoying ploughing my way through it!
If there aren't too many chemo nurses, you could always still buy chocolate, but maybe something a bit more luxurious, which might be a bit different to what they'd normally receive. (Probably too expensive though if your chemo unit is large!) x
Thanks Jencat, lovely ideas. The fruit might be a nice change. Working as a TA I know sometimes teachers and TAs sometimes moan about getting too much chocolate at the end of the year although the idea that you can ever have 'too much chocolate' is totally beyond me. Too much fruit on the other hand... 🤣 I might get something for the staff and something for the patients too 😊
Morning Bananabrain (good name ) All of your ideas seem lovely and I expect the staff will be pleased with whatever you chose, I'm sure just the fact that you are grateful for their hard work will make their day. The ornament idea is nice, I'm sure other people having chemo would like that. I gave the staff at the chemo unit and the radiotherapists a large cake and some biscuits. You could always stick to something like a box of chocolates for staff and a box for the patients to cheer them up-there was often a box for patients at my radiotherapy unit that people had brought in, which I always appreciated. Or maybe another idea could be a basket of fruit if you wanted to steer away from the chocolates/biscuits x
Hi guys, hope everyone is doing ok - I feel like we're all getting there (with quite a few ups and downs, but at least we're getting there!). I like reading how everyone is doing even if I don't contribute much.
Has anyone got any plans for a thank you gift for the chemo staff? I'm coming up to my last session (can't quite believe it) and not sure whether to do just a card or a gift too. The trouble with a gift is it obviously needs to be for all staff together. Do you think they get fed up with chocolates/biscuits etc? Do you think just a card is more appropriate? Or I was thinking maybe a little ornament type thing or picture (more for future patients I guess) to go on one of the windowsills as a nice little thing to brighten up the ward.
I'm really not sure what's best. Any ideas?
Thank you Jencat for trying to allay worries about paclitaxol: my hospital doesn't give out cooling gloves and slippers. The senior nurse hadn't heard of them helping and when I asked my oncologist, she wasn't convinced there was enough evidence that they helped. We have an aromatherapy cream for hand and feet neuropathy. The last few days have been a bit mixed as my ultrasound scan showed the the tumour (initially 4cm) and with cysts has only reduced to 3.8cm and that was after the radiologist drained the fluid from the cyst. When I spoke with my oncologist she said any reduction in size means something is happening and the structure of the tumour could be changing. On the positive side the cortex size of the lymph nodes suggest there is nothing abnormal, but they won't know definitively until surgery.
On the plus, plus side, I was dreading the 4th chemo: carboplatin, paclitaxel and zolodronic acid. However, the piriton infusion (I suppose to counteract the paclitaxel SE) made me feel spaced out and I even fell asleep with the cold cap on, slept on the journey home, then went to bed for a 3 hour nap. Then absolutely no queasiness and slept well last last and even went for a jog this morning! Fingers crossed it will continue. Not sure how long I can continue with the cold cap as I have 11 more sessions and paclitaxol is apparently very tough on hair folicles. My comb over is getting harder to cover!
Mangomum sorry to hear doxcetaxol is causing such awful SEs. It does seem reading through this forum that FEC and doxcetaxol are particularly nasty. Keep strong , you have been amazing so far.
SP I hope that the cold mitts and slippers work for you. It is so important to continue to do the things we really enjoy: I have a piano, but I am afraid I haven't played it for years. It actually needs tuning before I give it a go again. Last week I went to a summer school course on oil painting. I wasn't sure I would get through the whole week, but I did, just, though very tired in the evenings.Great to meet new people and do something not connected with hospital and cancer.
I hope you all have a much improved week this week.
Great news Sewbuddy about being discharged from hospital today and raising so much money at your Afternoon Tea!
Thank you and Rose2020 for your kind comments regarding Docetaxol and glad I was of some help. Obviously that was just my experience of it and lots of other people find it easier than FEC xx
Good morning ladies,
Great news, i am being discharged today! Even better news, my daughter raised £460 at the Afternoon tea event!
Rose2020, thanks for your tips regarding eyes, i still have a few lashes but my eyes aree tender and watery so something is changing. Good company and cake is defiinitly great for the mood not the waistline!
Joemic, thank you for your support regarding being off work. Up until now i had been using my days off for appointments or reccovery and working the rest of the time so i havenot recouperated in between. Time for change xx Iits good news that your arm continues to improve xxx
hope no one is suffering too badly this week
Just a quick check in after catching up with all your posts over the past week or so. Its lovely to hear lots of positive things going on for people but I do agree that it's ok to have a cry/rant/scream/shout on here if you need to as well!🤯
I'm glad Fridays new treatment went well SP and hope the next 8 continue to be uneventful!
So sorry to hear you've been in hospital after changing to Doxetaxol Sewbuddy but pleased you made it to your tea party. I find good company and cake helps any situation and raising money at the same time is a big bonus!
Hope you're starting to come through the side effects of your first Doxetaxol too Mangomum. Sounds like it has a completely new set of side effects to the EC which I felt I was just starting to get the hang of! Still we are all plodding on to that goal of finishing chemo and getting to the next stage.
I dont know if anyone else has had any problems with their eyes? But once my eyelashes went mine became red gritty feeling and swollen but Hypromellose 0.3% eyedrops suggested by the pharmacist have worked great I would definitely recommend them!
Take care everyone
PS welcome to Dezee😊and thank you to Jencat for your info about Docetaxol xx
It's great to hear that people are experiencing some positives in their lives at the moment.
SP - How relieved you must be getting your first one over with, I know we are all relieved for you. The wait you had prior must've been incredibly anxious, you did well to cope on top of the anxiety you had regarding the treatment already. It was great the cannula went in first time and I hope your veins hold out. At least I've only got one more to try and fit in mine. Well done for managing to walk 3 miles, it must be tiring but doing you good at the same time. I hope the rest of your treatments go well.
Ruth - I hope you managed to choose a bike for your youngest, I bet he's thrilled - all you have to do now is keep up with him
Sewbuddy - I'm so glad you managed to go to the 'ball' it must've given your mental wellbeing a big boost, it's a difficult decision to sign off sick, yes we have to tighten our belts and purse strings but at the end of the day we have to look after ourselves and from my point of view being off work has meant I have been able to rest when I have needed to, the time of day is irrelevant as I have no time pressure, apart from getting the kids off to school on time. I am sure this has contributed to the way I have coped with the side effects of things as I haven't worn myself out. Don't get me wrong I miss work and am looking forward to getting back but want to be as fit as I possibly can when I do. Luckily my work colleagues keep in touch and I go out with them for tea once every 3 weeks so I won't feel 'out' of it too much when I get back. At the moment they are planning my end of chemo party for end Aug as they want to celebrate it with me - I'm a lucky girl. I guess what I'm trying to say in a long winded way is it may be difficult not working for a bit but it doesn't have to be isolating, colleagues are only too eager to keep in touch.
As for my veins well the phlebitis has mostly sorted itself out now, all that massaging every 20 mins with E45 has certainly hydrated the skin, I can't believe I have only slight discolouring of the skin now which is only apparent to me. I was a bit worried when the swelling first went down as the skin was extremely wrinkly - I honestly thought it had been stretched too much and would stay like that - all the massaging has been totally worth it. A few of the veins in that arm still look like 'valleys' along their length and tight and sore but there are small improvements. No Ruth, despite my oncologist and chemo nurses knowing about the veins and phlebitis, none of the mentioned any exercises at all - I have picked up about massaging and exercises from this forum, I'm glad I did otherwise I might have more problems with my arm now than I have.
This thread is great for sharing tips to try and make coping with side effects a bit easier.
Hope everyone has a good week coming up and all who are having treatment find it smooth running.
Good morning everyone,
I am pleased to say ' cinders shall go to the ball!' That really made my day xx
RuthGr , you are so right, we should definitely listen to our own advice, our iinner voices are not always to be trusted lol.
SP , the waiting for over 2 hours does not help an already anxious mind! I''m glad you are doing ok
Mangomum, thanks for sharing your side effects, I hope you are coming through the other side really soon xx
Hi Jencat, thank you for your experience of 'T'. The neuropathy situation is the concerni believe. I have already lost toenails and have considerable numb/tinglling/burning patches on my feet and hands.
I foolishly thought this bit would be easier! Due to my diffficulty with walking now, I am seriously considering signing off sick until this is over! Will have to tiighten the purse strings and our belts though!
love and positive vibes to all
Wonderful news SP, I’m so pleased you have had minimal reactions and side effects so far. It must be huge relief to be out the other side of this first one. Still amazing....3 mile walk the day after, I am in awe 👏🤗👏.
Mangomum, I’m sorry to hear about your pain, do you think they might be able to ‘tweak’ the treatment for next time? I hope it is improving as the week goes on.
Sewbuddy, I hope you are able to attend the tea party and get a positive plan from your consultation. I have moved to Paclitaxol, so not sure how similar these are, but so far minimal side effects and a relief fromE&C. We all understand the ‘missing superhero’ times there is so much to deal with, on top of normal life, not just emotionally but physically, which I find particularly difficult. I know what I would say to others, but it’s very different getting through it yourself, but you will get through it.
Joemic, I hope your arm is getting better, I can’t remember if I mentioned the stretching I was told to do, whilst massaging, I can only describe it as Spider-Man shooting a web (🤔)
Lots of love to you all, and wishing a restful positive weekend. We are off to choose a new bike for my youngest in 10 mins (unlikely to be restful, but he will be delighted 😀)!
First, I want to thank you for all your good wishes and messages of support as I approached my first Paclitaxel chemo yesterday. It meant a lot that you cared enough to message and encourage me. I know that you understand the fear and worry that chemo brings ( especially when past chemo traumas come back to haunt me?!) and this helps a lot, so thank you.
So, I’ve survived and am still in one piece!! I had another 2+ hour wait to be treated which did nothing to help my anxiety levels. However, the cannula went in first time which was a result, as I now have corded veins in both arms to contend with.....fast running out of veins to use?!
NAB Paclitaxel is different from the “normal” Taxol in that no steroids or anti sickness meds are required...pre or post treatment! This has meant that today, I don’t feel so drugged. Second result!!
I was placed close to the nurses station so I could be monitored very closely throughout treatment. But, once we got going, all was well....no massive drop in BP so no crash team required! Third result and a HUGE relief!!
I wore the cold mitts and slippers, requested by me because I play the piano. Neuropathy would be a big problem, not just because of the pain but also for my well being, as playing the piano every day is a stress reliever for me. My digital piano and headphones are real friends, as I can play and be in my own little world, without bothering anyone!?
Today, I feel OK. I went for a walk this morning to get my circulation going, as I’m determined to get rid of these toxins ASAP. I managed to walk 3 miles.....fourth result!! I’m back on my salt water mouthwashes as my mouth is tingly.... so, just in case mucositis decides to return, I’ll keep this going all week. I’m resting this afternoon as I know my body is coping with a lot. So,1 treatment done, 8 left to go!!
I hope you are all coping as best you can. I’ll let you know if I get any different side effects.
I really hope you get to leave to enjoy the tea party. That's an amazing amount to have raised already and I'm sure your family are really proud of you. Re side effects, it may be early days as I only had my first Doxcetaxol infusion on Wednesday, but so far my legs have really ached and are quite painful. I've been taking pain killers and having baths with dead sea salts. I feel like I have a sore throat off and on like getting a cold feeling. My ears hurt on and off too, again a bit like a start of a cold. I got the same red rash as I did after the Fec but I think that's the steroids. I'm glad to say that I feel less toxic and sickly / nauseated than I did on the Fec and overall feel a bit better in myself emotionally. However, it's early days so I'll let you know if it gets worse or changes.
Hi Sewbuddy, so sorry to read that you're in hospital and hope you're able to escape for your Afternoon Tea tomorrow afternoon. I'm from the Oct '17 group and had 3 lots of FEC followed by 3 of Docetaxol. I found I had more side effects from T-I was in a lot of joint pain, but in hindsight I should have taken painkillers beforehand-the hospital had given me codeine to bring home with me after the chemo, but I'm allergic to it and hadn't asked for anything else instead.The next two infusions were a lot better. I did find walking quite difficult and I had Peripheral Neuropathy in my fingers and toes, which I've still got now, although not as bad as when I was going through chemo. I didn't have any of my treatments reduced, but would that be a possibility for you instead of completely cancelling them? xx
Happy weekend everyone,
Thank you Mangomum for your kind words, I remember feeling very concerned for you in that first cycle xx. My inner superhero certainly deserted me this week lol.
Joemic Nothing has shown up yet on cultures so I have to complete the course of Tazocin that was started on Tuesday, so I will be staying in until Wednesday now but at least my family are satisfied that I am resting!
Those of you that have recently started Docetaxol, I would love to know what side effects you have had? My oncology appointment has been brought forward to discuss the side efffects before we go ahead with my next treatment, it would be nice to know how we all compare. I really dont know what I should have expected but after a couple of visits from oncologists on the ward i am worrying that they are thinking of cancelingl it
My daughter will be holding the BCC Afternoon Tea tomorrow, i am hoping to be allowed to leave the ward for a couple of hours, she has already raised £190 through facebook!
SP fingers crossed, you are doing ok after yesterday's treatment, you had an anxious build up to it this time but at least you now have a clear plan that you are happy with xx
love to you all
I hope they manage to find the pesky blighters that are causing the infection. At least if you know you might be able to ward them off in the future.
SP, I do hope your treatment went ok for you today, you have been amazingly strong going ahead with something you were dreading but hopefully with all the specialist care you should hopefully have been well looked after.
Good luck to all, I hope you have a relatively uneventful weekend, chemo speaking, but eventful with the positive things you want to do.
Glad to help if I can Dezee x I've had 6 infusions of Zoldronic Acid and haven't had any problems with it apart from last time when I did feel a bit tired and achy afterwards-however I had that infusion only 11 days after my Dad died, so it might not have been the acid that made me feel like that.
I had some counselling after I finished treatment, which I've found useful as I found it quite hard to just go back to 'normal' afterwards, but lots of people expect you to be! x
I really appreciate that you have spent time replying to my message as having spent last weekend catching up on this forum I know you have had a challenging couple of months and not for the first time. I will ask about the gloves and slippers when I have my bloods checked on Monday ( I have a picc line so go to the chemo suite for bloods).
I will be thinking of you tomorrow- you sound like a very resilient woman. I hope it all goes well- I have coped so far but am more anxious about the new 3 drugs next week. Keep strong 🙏🙏xx