@Karden Sorry that you are also not feeling good at the moment. You are so right about the loss of identity. Right from the time of diagnosis I vowed that the cancer would only be a part of me, rather than defining me. I am sure so many others feel the same way - we are still the same person we were before this. After a period when the diagnosis and treatment has dominated my life, I am again determined that what I am going through will only make up part of my identity. The hair loss is the thing that identifies us to the outside world as a cancer patient and that is one thing I really dislike.
The other thing that I resent is the total loss of control. We are caught up in this treatment where everything is controlled and dictated by others and the current situation with Covid only makes this worse.
@donkeywoman, yes I was totally reluctant to agree to chemo. Would still like to turn my back on it and I truly think that if it was just me I would take my chance with the hormone tablets but I feel a responsibility to my family to go through this. Your comment about going into this healthy and coming out looking very ill is spot on - and again the hair loss plays a big part in that.
Sorry to sound so negative when so many of you are actually having a worse experience and are still being positive. But thank you for reading - it is good to have this space where each and every one of us can express how we are feeling.
@Karden We will get through this next treatment one way or another. Good luck and fo let us know how it goes.
And good luck to everyone else this week x
@Karden so sorry you are having a bad day. There does seem to be so much loss with this, we are bound to resent it and mourn the things we lose. They should all be temporary and we will get through these miserable times. But we are allowed our sad days.
Fingers crossed, tomorrow will be better xx
Hi @grannyp I feel the same about my hair loss, it's definitely the hardest side-effect to adjust to. I tell myself that it's the price I pay for a longer life but it still doesn't make me feel better. I'm feeling very negative about myself today and it's making me feel that cancer has taken my identity away.
I have my Covid test tomorrow, oncologist on Tuesday and 3rd treatment on Thursday. I also have that feeling of dread, knowing that the cycle is about to start again.
I'll probably feel better tomorrow and hopefully this is just a blip.
Hope all goes well for you. x
Hello all, @grannyp - I totally get the wanting to run away from it all, I get the same thing. As I recall, we share a previous reluctance to have chemo at all, so that probably accounts for at least some of it. But let's face it, we started chemo feeling fine and knowing that we will come out of it feeling ill, exhausted and looking pretty odd... So who can blame our reluctance??
The hair thing is weird and, as you say, different for each of us. I was very upset at the thought of it, then fine and happy to clip most of it. But now I have bald patches and find that quite grim. So I just keep hats and beanies on and don't look. Still have eyebrows and eyelashes but think that, with Docetaxol, I'm likely to lose them all...And it won't be growing back for a while.
@Karden thank you for your kind words. Are we the only 2 on here having Docetaxol? I think you are treated by Sheffield two, aren't you? Maybe they just like putting us through it 😁. My friend in Nottingham had it too, a few years ago. She managed to get through and come out smiling, if bald! Her hair has grown back a beautiful, bright white, she looks great.
All the best for this week everyone - especially those having the next dose and those who are home schooling xx
Hi @Shine13 and all
I am triple positive and have my last EC on Tuesday, I am then doing weekly paclitaxel for 3 months with HER2 therapy the same as you.
I have a fine covering of hair, and still have eyebrows, hoping they stay after Tuesday.
Apparently the weekly chemo is easier, fingers crossed as I have a few rough days in the middle of the EC cycle and home schooling is no fun when tired lol
Chemo nurse said hair grows back on pacitaxel so fingers crossed
Sending love to all x
Hi @Shine13 oh I'm at the marsden too, similar diagnosis, Her2 triple +...about a month behind you, will start the weekly taxol March I think, all being OK. Have you thought had a port or Picc done? I'm considering it as injection sore Fri for number 2 X
My oncologist has said most people find the second regime easier. That is really good news for me as EC has not been to bad much better than I expected. I am under the Marsden and I think it varies on brand of drug and frequency of dose. It is confusing and hard to compare as treatment is individual.
I will be doing weekly Paclitaxel for 3 months with the Her2 therapy tratuzumab and pertuzumab every 3 weeks starting 5th Feb. Tripple + with one lymph node. I ll choose to remain optimistic untill the chemo proves me wrong, chews me up and spits me out in spring when lockdown is a thing of past.
Even though my hair has all gone I still seem to have eye brows. They were really thick to start with so I m hoping they will stay- any one lost them?
My first three cycles have gone really quickly so hoping it will carry on the way. Good luck for anyone else ticking off another cycle this week. Last EC on Friday feels like a milestone and light at the end of the tunnel is a bigger pin prick.
Pleased to hear that you are feeling better with this cycle and hope that it continues. To be fair, I was better with my 2nd, too - I was a bit more tired but think that may have been partly my own fault for doing too much the first couple of days. I have no reason to think that the 3rd will be worse and my nurses always say that the vast majority of people follow the same pattern. But with the 2nd and this one it is just that feeling of going back and doing it all over again! I only agreed to chemo very very reluctantly and I think that I just won't accept that I actually have to go through all this. Not shutting my mind to it but angry about the whole situation.
Anyway, I am sure that I will get into the week's routine of oncologist chat on Monday, hospital for bloods & covid test on Tuesday, hospital for treatment on Wednesday and hospital for filgastrim injection on Thursday! Good to go out, I suppose - since the last cycle I haven't left our village, only going out for walks each day!! x
Hi @grannyp ~ sorry you're dreading 3rd EC, I was the same before my second, but just wanted to let you know it's getting easier for me, not harder. Early days, only day 3 post treatment, but bar being tired, I feel 80% normal, nausea so well managed, and a bit woozy but nothing major at all. I do hope you don't find a turn down with #3, thinking of you X
Hi everyone. Been reading all your updates and seems we are all a bit up and down but so far coping with most of what these awful treatments throw at us. Well done to everyone for getting through it all in whatever way you can.
I am due my 3rd EC on Wednesday. All kicks off tomorrow As with the 2nd cycle, I am now at the stage where I would like to run as far away as possible and not have to go anywhere near my hospital again. I have been very fortunate so far with no serious side effects - I have only really had tiredness and mild nausea in the first few days and a few little niggles here and there. But having felt pretty much normal for two weeks it feels so hard to have to go bsck to the beginning again and wonder if it is going to be much worse this time. I am also getting angry again at having to go through this whole nightmare. And I am definitely not dealing well with hair loss. I admire all those who can learn to accept it and get on with things but we are all different for me the hair loss is probably the worst thing at the moment.
Bur I shouldn’t really moan as I am fortunate to have suffered so lightly physically so far. And on Wednesday I will be halfway through and on the downward slope. And the sun is shining today and I am looking forward to a good long walk!
Lots of luck to everyone having treatments this week and hope everyone else is feeling as well as possible x
Hi @higgi ~ I've had your message in my head for couple of days, wanted to reply and then couldn't find it yesterday (chemo brain? Lol), so pleased I found you!
The Christie is suppose to be superb so that's great you're going there. I too have been offered Pertuzumab/perjeta ~ as an addition to the Herceptin I think it increase the cancer free rates. I've also got access to another new drug, I'll find out what it's called.
I too have heard that docataxol can be harsh, although not everyone I've spoken to says they're finding it bad, so I do think it depends. Nurses have to warn you but they do unwittingly sometimes put the fear of god in you, and then you're OK! So you'll be on three weekly chemo? I'm going to be on weekly taxol which is as effective, lower dose so much more manageable, the Christie might offer this, worth asking? Apparently women find it easier than EC...
I've just had my second EC and would say I feel 85% normal now. Day 3. Bit tired but the horrible toxic feelings from #1 are largely absent so that's good and nausea so well controlled with the four pills they give me... But got the horrid injections starting today and they made me feel bad last time, until I started pain meds before doing injections and then was fine! worth doing if you do too?
My friend had two different types of tumor in different breasts and she's fine now.
That's wonderful you're doing the challenges! Do send the links if want to, I'm interested to know more, way to go you!!!! X
Hi @donkeywoman @that’s reassuring re docetaxel... that it might not b as bad as the nurse said !!! I don’t have it til 3 feb ..
at mo it’s day 5 after EC 3 and it’s my usual crash day but I know wat to expect now and so feel a bit more in control if that makes sense !
I always have a little weep in the evening... just comes from nowhere but feels good to let it out ! We certainly are incredible in every way to be going through this through covid ! But we r and we will get through it ... sat night girls will b here b4 we know it 🤣❤️
hope you are all managing and have a lovely Sunday 😘xxx
Hi @donkeywoman I'm sorry you've been feeling sad today, it's a real toughy isn't it? It sounds as though going outside has lifted your spirits though.
I also remember those Saturday nights out, seems like a distant memory but if we hang on in there we know they will come back again and we'll probably be through our treatments and ready to party again.
Homemade shepherds pie in the oven tonight followed by an episode of The Pembrokeshire Murders, we certainly know how to live!!
Take care and enjoy the rest of your weekend. x
@higgi I'm on Docetaxel - I'm finding it quite a grind, but don't have all those side effects! I'm mainly tired and my guts are weird (hungry but queasy, gurgly, burpy, windy....) but I only had bone pain after the first one, it didn't come back this time (🤞). We are all so different, and react so differently. Let's just hope you are okay on it. I'm sure I've read on other threads that folk have found it easier than EC.
I've been feeling a bit sorry for myself today, just daunted at another 3 months (at least) of this. But I watched Midsomer Murders by the fire, after having an hour and a half outside, and I've perked up a bit. Now just need to decide what to have for tea...
Happy Saturday evening all. Do you remember the olden days, when folk went out on a Saturday night?!
There's so much in the news about delays in cancer care... It's horrendous, HORRENDOUS stress on stress and an absolute outrage. I do hope no-one here affected. So many hugs x
Haha, @donkeywoman @swingers we are😂 pop up all over the place! 😂 top tip for transport, someone else said the same. My GP upped me to shielding category today so hoping that might help finding help...
My top tip for today is don't think you can have a drink just because you're feeling 'normal' just before next treatment. Had a small (OK, large) Bailey's just night, first drink in weeks, and my god, the toxic feelings today, bleugh....
Thanks so much for good wishes for tomorrow. How are you doing today @donkeywoman ~ I do hope energy has picked up a little and you got out for j walk? X
Hi everyone love reading your updates ! Just had a busy 3 days back to back hosptal trips out ... oh the joys ... mri then bloods then EC last round number 3 . But then I swap and go to Christie’s as I’m in a relatively new drug so my local hospital can’t give this . I seem to be managing the EC not too bad ... get the headache from hell on the day but gone by next day then crash day 5 get bone pain day 7 then gradually pick up . By day 20 I’m feeling almost normal whatever that was ! Then yes the dread of oh no got to b zapped again .
my right arm is suffering from cording of the veins damaged by chemo as I don’t have a port or pic but may have to if they worsen ... I got huge veins 😂
they went through wat to expect with my next 3 cycles new regime starting 3 feb and 4 feb !!! I will be on docetaxel perjeta (new her2 drug ) and herceptin. They said docetaxel is horrible... to expect the worse !!!! I’ll only get 1 good week out of 3 . So well done u guys on docetaxel already ! She said I’d have horrendous bone pain heart palpitations sore mouth and pins n needles fingers n toes n nail beds cud lift ... bloody hell 😂 just gets better !
still no results re mri but I have follow up with surgeon on thur 21 so will know more then . My her2 invasive was only 7 mm but had spread to 2 lymph as very near my arm pit .. unlucky ! I also had 2 DCIS. 23 mm high grade . Unfortunately not hormone positive .
hope all goes well taking each day at a time ! I’ve just set up a just giving page as I take on more exercise challenges... makes me feel so much better . Just enrolled on a virtual cycle lands end to john o’groats n virtual walk Hadrian’s way . It’s fab u just move if you like steps count to go towards the distance .. u can take as long as you wish so no pressure if not feel great some days /weeks ... AND you get a wonderful medal 🏅
If interested in any virtual events look at the app conqueror.
love to you all xxx
@donkeywoman I have my PICC line done at home by the district nurse and it works fine. He/ she is all done within half an hour and it means that I don't need to leave the house or come into contact with any other people. I was told that only some are trained in PICC lines and apparently my local team has 4 so that's all good. I get the PICC supplies from the hospital on chemo days so that the district nurses have everything they need.
@Pyewacket I just have a fine fuzz left now but leg hair still as it was. ☹️ I must admit that I'm finding it really hard to adjust to the bald look and hate that it's going to take most of the year to get any decent length of hair again. I've tried short styles in the past but don't think they flatter me and always go back to a shoulder length bob.
However, putting on my sensible hat, I know it's a small price to pay if I can be cancer-free. 🤞🤞
@donkeywoman I have to go to the hospital for line flush, they have a special PICC clinic. Wasn't even offered a home visit. I guess it means they can fit in more people by having us visit them. It's not too far for me, but the travel is definitely the most time consuming bit, actual procedure only takes about 10mins.
Wishing you all well xx
Morning all and hi @BelindaFleur - we are a couple of swingers!😂 (between December and January that is...). The transport thing is a problem - hope you can get a volunteer? I think that folk are desparate to help at the moment and, if you sit in the back, with a mask and windows open, it should be safe? I live in rural Derbyshire and either my husband or mother in law (who is part of our household) take me. I would really like to drive myself but I have tended to be quite sleepy by the end of treatment so am not risking it. I do quite enjoy driving myself for blood test - just shows how dull life it at the moment!
Can I ask those of you who have Picc lines - do you go to the ward for flushes/dressings, or have the District Nurses? I'm leaning towards going to the hospital - probably because I used to be a District Nurse and know how varied their skill sets are and, because of my nursiness (but there's not enough for me to want to do my own or teach my husband) I think I might get a bit anxious about someone getting it wrong. Whereas the chemo nurses do it all the time, it's their speciality. But it's another trip out and maybe that is not sensible? I will make a decision, but just interested in other people's experiences.
@Pyewacket I love your attitude towards your hair loss! I must admit, I am slightly fascinated by it too... keep tugging little bits out (it's clipped short but still just about covering my head). And I too am not happy about the thought of no eyelashes or eyebrows. I guess it will all grow back at some point.
@Karden the gut thing is weird, isn't it? I can feel hungry and quite fine one minute and then have cramps and gut ache the next. Like you, everything tastes horrible, so I am very limited in what I eat. But i need to eat about every 2 hours, or I get indigestion. We are both on Docetaxel so maybe it's one of the things? It feels to me that the whole of my guts are affected... I have also gone off cheese, which is so weird for me, as a cheese guzzling veggie! In the long run that could be good as I will definitely need to lose weight after this lot. But it's annoying now as it's such an easy quick calorie gain.
Hope all your Thursdays go as well as possible and all the best for tomorrow @BelindaFleur
Good morning everyone,
Been keeping up with everyone's posts, they are so helpful thank you all. I don't envy you neoadjuvant folk at all, at least i can see the finish line with my surgery behind me. I hope for wonderful tumor shrinkage results for you all.
Had my 2nd EC on Xmas Eve, the team said my complaints from the first round were from stopping Tamoxifen rather than the chemo. I was rather sceptical, but damn they were right. My 2nd round I have named 'the burpy one' as I just seemed to burp for an entire week, which lead to some indigestion. Other than that and being a bit nauseous, although not quite enough to take a tablet, I really can't complain.
I shaved my head on Xmas Day (20 days after my first EC round) - didn't have much else to do! - and sent a picture to my family to give them something to laugh at. I really don't mind it, although it's a bit of a shock still catching myself in the mirror when i don't have a head covering on. My eyelashes are starting to thin now though, which bothers me much more, I'll look like a sick person once those and my eyebrows go as they're dark.
However the hairs on my legs though look like they belong to a chimp! I didn't shave them for a few weeks before chemo, thinking I could enjoy watching them drop out all the more. No they just seem to keep on growing... grrr the one benefit of chemo is yet to show it's face!
Take care all! Pye x
Welcome to the site @BelindaFleur
@Georgie76 I hope you are doing ok.
I haven't had anything to report for the last few days and am feeling pretty good but like others I am not looking forward to it all starting again when I have 3rd cycle on 21st.
I had another MUGA (heart) scan yesterday and will find out if everything is ok when I see my oncologist on 19th. The technician told me that I will have them at regular intervals whilever I'm on Herceptin.
Just one thing, after being ok for a week or so, I had a couple of diarrhoea episodes in the night, took Laporamide which stopped it. I had really enjoyed my evening meal of beef in brandy sauce but it must have been too rich and I paid the price. It's a pity because most things don't taste as they should and I'm really missing my favourite foods.
I hope everyone's doing ok. xx
Not bigger for long!!!! That chemo will shrink it in no time!!!! How many have you had?
Top tip for transport, thank you 🙏🙏🙏🌼🌼🌼
@BelindaFleur Yes we are very similar but mine is bigger than yours by 3mm.😀 I did get the bus but now drive because of infections rates I am very close to my treatment centre. If you are worried check local council/GP and COVID support as there may be volunteer groups to drive clinically vunerable to hospitals for appointments. There are lots of volunteers around at the moment.
Hi @Shine13 ~ thanks for the lovely welcome! We're very similar, I'm 51 too, doing two weekly EC too... That's interesting you too have triple positive with strong receptors in all.. My tumor is 20MM on mri, 17 on ultrasound, but they go on the mri apparently and that put me into the neoadjuvant category which was upsetting at the time but glad now getting it done.. So doing 4 EC, then weekly taxol, I think.. Then op and radiotherapy.
So bar doing nothing but laying on the sofa for 8 days, eating, first session was as OK as could hope for.... Pills dealt with the nausea well... Steroids, yuck! Got sleeping pills but don't want to take them all the time.
Doing cold cap, so far so good but too early to tell really I guess... Nose hair going as it streams lol... Possible cystitis so took antibiotics... Injections fine until I thought I was having a heart attack, which turned out to be bone pain and panic, lol... Wasn't lol at the time mind...
Oddly, woke in night once and had sore ulcers but they were gone in the morning!
Is anyone worried about travelling to the hospital during covid on public transport? X
Got the COVID jab yesterday the nurses said you have to be post chemo 3 days so went for it day 4 as last day Kingston Hopital were provideing drop in for clinically vulnerable all going to GPs now. Just squeaked in.
@BelindaFleur Good to meet another tripple positive I am high across all receptors as well.
My EC is 2 weekly the denser regime I think there is a criteria for this one and it is tougher. I am 51 with no medical history.
Good luck for treatments this week.
Hello everyone! Hello @donkeywoman ~ lovely to see you here too! 🙏🌼
I'm an interloper from Jan starters, although technically speaking I started EC in Dec, the 30th, and have my second on Fri.
Things going OK so far... Had a horrible response to the filgristin, but bar that, haven't felt too bad... Just about feeling normal now and starting all again on Fri 😕
I'm her2 triple positive, strongly everything...
anyway, just wanted to say hello! Loving your posts, they really help don't they, and big hugs all x
Thank you ladies, I will try to stay positive. Half way there now!!
I did actually manage to get more sleep than I thought thanks to headspace lol so not so tired and miserable this morning! 😄🙈
Hope you all have a good day 😊
Hey @Georgie76 and all,
I totally get where you are coming from with the dredding it feeling! I just start to feel 'normal' then it's time for the next one. You have got this! Staying positive is best, although on occasion this can be hard but we bounce back.
I too was told that I would need to complete all my chemo before my operation. I am hoping that weekly paclitaxel will be easier than EC.
Good luck for tomorrow, you are strong, you got this, onwards and upwards and another one to tick off the list!!!
I had really thick hair so I still have a covering of hair but its thin, wondering if I should shave it off but apparently it starts to grow back on weekly chemo........we will see
Sending you a hug for tomorrow
@PaulineS27 sorry to hear you are going through similar. I held on to my whispy bits as long as possible, I don't even know why 🙈 just couldn't bring myself to be totally bald but it's not so bad now I've had a few days to adjust.
I doubt I will sleep tonight with my next cycle tomorrow. Really dreading it now! It also appears I was mislead by the surgeon who said I would be assessed after my 3rd treatment to see if the lump had shrunk enough for surgery 🙄 according to my oncologist I will continue with the full 6 regardless as it gives more chance of it disappearing altogether. I suppose it's best to continue and throw everything at it but it's my 4th treatment that scares me. I will be there for 8 hours when I change on to the T cycle which I'm really not looking forward to 🥺 I suppose I need to be positive that I won't need the extra hour and a half for the cold cap too!
Another positive today, the Macmillan nurse rang me and told me about a grant she can claim for me up to £300 that helps towards travel costs, new clothes if you lose or gain weight and heating bills for being at home more at the moment. Never even knew that was a thing but definitely handy.
Hope you are all ok and keeping safe!
Good news to hear that tumours are shrinking, and 🤞for you @higgi when you get your results. I've put weight on too! It doesn't seem fair to me, to feel so crap and still get fatter... I don't even enjoy food as my mouth tastes so horrible. Oh well, they tell us to eat, don't they...
I had 2nd TCH treatment last Friday (Docetaxol) and although nothing dramatic has happened, I am much more fatigued this time around so far. I am making myself go outside, but not getting far yet. I'm not pushing myself too much, on the assumption that I will feel better in the next week or so.
It's good to hear that covid vaccines are starting to come around and it also makes sense to have it when our immune system is at its best, good tip thanks. I've not heard anything yet, wasn't expecting it really until February. My team (I am a nurse) have had their first ones this week.
I'm still not sleeping much, which is a double whammy with the general exhaustion. Thank goodness for radio and podcasts (and hats, as it can get a bit chilly in the night!). Off for a bath soon, I always think it will help..
Take care all x
Hi @Shine13 @and others great news re shrinking of tumours ! I only had my mri yday so still waiting results 🤞 they told me even if it stays same size that’s perfectly ok as mines fast growing it still shows it’s working . I also was told that someone else’s didn’t shrink after 2 cycles but after 5 had virtually gone ... so that’s promising isn’t it !
I’m due cycle 3 tomorrow! Still pacing myself 😂 are some of you having cycles more often than every 3 weeks ?
I have put on 3kg !! 🤣 I knew I wud as I eat so much as it makes me feel better !
I asked about vaccines and the oncologist said when I’m offered it to choose a date just before next chemo as that’s when immune is at it’s highest and it will work better . Something to bear in mind . But if not sure ask your oncologist!
big hugs to everyone! U all doing so well ! X
I had number three EC on Friday. Feeling quite good definately feel better if I manage to drink the recommended 3 litres and get out for exercise a walk or bike ride. Hope it lasts, sorry some of you are having a much harder time. Chemo seems to be a very individual journey.
I had a look at the cancer fit website - very good -Higgi posted . I like the idea of something proactive you can do yourself.
My tumour has shrunk but only a small bit. Sounds like some have had a good response that is good news.
Has anyone been offered a COVID jab? I found out by accident my local hospital is doing a drop in for patients on chemo so I am getting an injection this week. You still have to shield but less than worry as I live in london.
So some areas are doing chemo now rather than wait for group 4.
Hi @Georgie76 @So many things on this post resonate with me, I have had my 3rd EC and going upstairs feels like climbing Mount Everest. I am out of breath and panting like a war horse, apparently its WBC?
My hair is a lovely sparse whisp looking covering 😂
The children are keeping me on the go but boy am I tired..........
On a plus the tumour is shrinking too
Sending virtual hugs and positive vibes xx
Hi grannyp and everyone,
Just popped in to see how you are all getting on, especially with the cold capping. To follow on from the problem of thinning and developing bald patches, I had four, if there is not enough hair to protect your scalp ask to have a blue surgical cap placed under the cold cap. Paxman recommend this and in my case the bc nurses suggested it. It's worth persevering as it really does help with regrowth. In my case my already thick hair came back thicker. I have got a bit of a chemo curl going on, especially from where I had the bald patches. As a consequence my hairdresser suggested I grow my hair into a short bob to allow the curls to drop a bit.
Susie B xx
Hey everyone, hope you are all good.
Haven't been on in a while as I think I was just burying myself in my Christmas bubble but back to the harsh reality of the next treatment coming up on Wednesday.
It's great to read all your updates and see that most of us are coping ok so far. Sorry to those of you who haven't been so lucky.
I myself suffered the worst on Christmas day! Had a lovely bout of diahorrea 🙄 ended up on the phone to the treatment line as I couldn't stop. They were quite concerned I had picked up a stomach bug and wanted me to go in. Thankfully after my mum bringing me some imodium bless her, it stopped enough to be able to enjoy some of the afternoon.
The fatigue again has been quite hard to deal with and I am trying to get out for a walk every day to combat that but end up feeling shattered when I get home. I also feel quite breathless even just going up the stairs but that's also probably down to being so much less active especially now it's so cold!
Hair update: I had the cold cap for my second treatment but unfortunately it just didn't work for me. It continued to fall out in handfuls even though I wore a scarf so I didn't touch it too much or have to wash very often. I ended up with a very few whispy strands all over my head which made me look very sickly. I took the plunge this morning and shaved the rest off. I really don't like it but it's better than it was.
On the positive side though my lump has drastically reduced in size so there is a slight possibility after the next MRI that they may decide I don't need the next 3 sessions and move to surgery 🤞
Hope everyone is coping ok in these strange times.
Hello @Karden and everyone. Wow, don't feel bad at having a better time this cycle, you had an awful experience before. Great that your mouth is okay this time around.
2nd treatment done and ticked off. 2nd of 6 (Docetaxol, carboplatin, tratsuzomab). All fine so far, I'm trying to just think a day at a time..live in the moment!
@grannyp hope you are still feeling good?
I'm not expecting much sleep tonight but about to get comfy. And there is cricket from Australia on the radio all night so I am sorted! X ps I definitely get a bit high on steroids..
Just been reading your updates and it sounds as though you are all suffering in various ways.
I'm feeling a little guilty 'cos I have to say that I've had quite an easy time since my 2nd chemo last week.
The first one was horrendous but I've felt pretty normal this time apart from having thrush as a result of the 3 different antibiotics I was given for the UTI.
I had a sudden diarrhoea episode yesterday evening but managed it with the meds and I have had another really good sleep.
My chemo is Docetaxel, cyclophosphamide, Pertuzamab and Trastuzamab every 3 weeks for 4 cycles. I only have a fuzzy covering of hair now but chose not to cold cap and I have shaved it.
I have a heart scan next week before 3rd chemo on 21st.
Good luck with your treatment today @donkeywoman and I hope everyone's symptoms start to ease. x 🤗🤗🤗
@grannyp Thank you, your calm words of wisdom are a great friend and comfort. Thank you for taking the time ❤️ Hoping to stick with the cold cap as the docetaxel seems to be the one to cause most concern.
Hi everyone lovely to read your updates !
think I might try the antihistamine to sleep better !
I was surprised that I had a really off sickly day yday day 15 post cycle 2 ! But today I’m ok ! Cold sores in nose improving ! I’m still missing walking outside as we still have lot of ice here n it snowed again ! I’m big into exercise and was put in touch with this website
please take a read it’s fantastic and so encouraging. It’s the one thing that’s within our control snd has amazing benefits . Lots of useful info on there !
I seem to be eating more than ever as if I feel sickly , eating helps ... the more I eat the better I feel .... dangerous 😂
keep getting spots on chin like a teenager ! Not impressed at all .
head but itchy other wise no pulling now ... hardly any hair left .
dodging covid n any other bugs as always n hoping covid doesn’t ever stop our treatments !!
busy week next week ... min repeat breast mri to check ow cancers responding to 2 rounds of EC Tuesday bloods wed chemo round 3 hopefully !!!
big hugs to u all ! Stay safe ! It’s ok to have ups n downs . Crying is a release it’s perfectly ok xxxx
Yes, it certainly is distressing when the hair starts to disappear. Mine started gently moulting about a week before my second EC and shedding quite heavily a couple of days later. The amount that comes out in the comb or your hand is definitely alarming! I also had thick hair and by the time of my second treatment I knew it was much thinner and the nurses could see the thinning but no-one else would really have noticed. It continued to shed at the same alarming rate for another week and I now have very thin patches on the crown. But whilst it is still shedding it has noticeably slowed since yesterday. I am just waiting what happens now.
I am trying to follow all the advice that Paxman give online and in their literature. They do say that you will shed all the way through treatment although it will slow down at times, so although I don't like it I expected daily loss. They also advise not cutting all the hair off if you can as having more hair gives more scope for covering thin patches and also it may make it easier to have a half decent hairstyle after the end of treatment. I know that a lot of ladies do cut or shave though as they hate it if gets all wispy and lank and also it reduces the amount of shed hair that they have to deal with on a daily basis. I can totally understand that! For the moment I am managing with wide stretchy hair bands which cover the thinning area on my crown - this is working well at the moment and helps me to feel as if I have relatively normal hair but I may well have to get the clippers out if I have another big loss after - or even before - the final EC. One thing I am trying to focus on is the Paxman advice to concentrate on the hair you have left, rather than what you have lost. And I am putting my faith in the cold cap helping to promote quicker hair re-growth. This will keep me cold capping even if it becomes more uncomfortable with less hair - and my nurses totally agreed as they have seen the better re-growth in many people.
I hope that your hair loss slows down in a few days and you just have to do what you feel comfortable with - we are all individuals who handle this rollercoaster in our own way.
Hoping that any side effects continue to be manageable and good luck with the rest of your treatment. Counting them down now!
A belated happy new year to you all!
Had my second round of EC yesterday. Seem to feel a bit more nauseous than last time but still manageable.
I used the cold cap but my hair is dropping at what feels like an alarming rate, since Monday. Having a thick head of hair, I think it's only me who can notice the difference so far. But like so many have said, it's quite distressing, particularly as I'd left it quite long at shoulder length. Can anyone advise if it slows down and after how long? Really considering getting the clippers out if it's going to continue.
On the plus side, still getting out for daily walks of varying lengths. Always beautiful, even if it's cold or cloudy, or as today, foggy! Also started a meditation, which I've never done before. Takes a bit of getting used to but I think I like it!
Positive thoughts to all those who've just had treatments or are about to have ❤️
Yes, I was eager to get my 2nd treatment done so that I would be one-third of the way through but like you I was dreading feeling grim again for a few days. I had to go back and look at what I had written about those early days to remind myself of how I actually felt as the two weeks of feeling normal had sort of blocked out the memory of the first few days. Hoping that your bloods are fine and good luck with your treatment tomorrow.
Today I had that wonderful feeling of waking and feeling 'like myself'. I have felt pretty much ok for the last couple of days but today is definitely a step up. I appreciate I am lucky with this and that not everyone gets to feel like this. I also know that I could be hit by other side effects and that I will undoubtedly be more tired as the cycles progress - this 'normal' feeling has already come a day later in the 2nd cycle compared to the 1st. For now, I will try to forget about the next treatment as much as I can, get on with as much work, personal and household stuff as I can and definitely exercise as much as possible.
Hope you all have as good a day as possible and keep counting down the days until we get to the end of this chemo nightmare!
Morning all, @grannyp as often, your words really chime with me. That swinging feeling from 'I can do this, it's only a few months, it's winter, it's covid, just keep my head down' to 'I can't do this, where can I run to to escape it all?'! I've had a really good few days, felt pretty much back to 'normal' and even had some sleep. But, if bloods okay, my next treatment is tomorrow. I've just taken first dose of steroids, so it's all starting feel real again. I do want to have it, as I will then be 2 down, a third of the way through. But then I remember all those moments of just feeling a bit grim.
I don't know how everyone else feels, obviously, but I feel that each of the symptoms I've had (apart from the pain and sleeplessness) have been quite minor. But then I realise that, once they all come at once - loose bowels, stomach ache, sore, dry mouth, fatigue, low mood - that is quite a lot to deal with! I do find it quite helpful writing my symptoms down, and now I can at least remind myself that there will be good days towards the end of the cycle.
Being outside and moving definitely helps, but I seem to be more feeble about the cold than I used to be. And my husband clipped my hair last night, so several hats will probably be needed! Yoga is good - I've not done any for a while, but maybe I will find something on you tube and get back to it.
How is everyone else doing?
It's a beautiful crisp, frosty and sunny morning here in Derbyshire today. Once I've had the call from the hospital, I'm going out for some deep breaths.
Hope everyone has the best Thursday they can x
Just checking in to say hi to everyone and hope you are all managing to stay as positive as possible. Seems that many of us are experiencing a few more side effects but fingers crossed that these all stay manageable. We are all part of the way down this path now and in reality it won’t be that long until we are starting on the homeward strait. It still seems a long way off right now and I have to admit to having many moments when it all just seems too much and I just want to run away and never go near the hospital again!! I am sure I am not on my own with still wondering how on earth I arrived at this point and how I will ever manage to get through the next few weeks. But somehow we will keep on going. The current grim weather and grim news doesn’t help but I am trying to focus on things that make me feel brighter. Walking further again each day really helps and today I did a yoga practice for the first time in 3 months - only 30 minutes and a very gentle one but it really felt good! Hope you are all finding something to raise the spirits anc keep yourselves going. And good luck to all of you with appointments and treatments over the next few days,
Hello @PaulineS27 and everyone, well I took an antihistamine last night and definitely slept better! I was able to lay down all night and, although I still woke every 2 hours, I got back off to sleep much more quickly (a podcast about Brexit did the job!). So thank you, I will keep going with it. I just read a different thread on here about Herceptin (mine is Tratsuzomab) causing lots of aches and pains. Bit grim if it is that, as I've only had the first injection of 18! But I'm glad there could be a simple option for some relief, so thank you for the suggestion. x
I'm doing ok, it isnt a walk in the park but I'm ticking the treatments off as I go.
I hope the anti histamine helps with the aches and pains.
Take care of yourself x