Morning all ❤
How are you all feeling after your treatments?
@kereru I feel good this morning, though I've been awake since 3am as I didn't sleep well but not through being unwell just wide awake. I'm wondering if the steroids are giving me energy? My partner did say that I might dip after day 3 when I don't have to take them anymore. Who knows 🤷♀️
I'm so glad you liked your hair, I felt the same. I've always had long hair so I went for a short bob (think of Frankie from the saturdays) and I wanted to hate it but I actually think it suits me. Makes me look younger I think. So we might both be crying on the floor when it comes out ❤❤
@NEWBY123 Sounds like and your husband have had a lot on your plate. I'm sorry to hear that ❤ I hope things get into a routine for you both soon. I've not been offered any help with wigs or anything - nobody has said anything. I'm not cold capping either. McMillian nurse still hasn't returned my phone call from last week to be honest I'm guessing it would be her that arranged stuff like that. ❤
@Pollyannasglad I'm wondering if hardening is what happened to mine. I'm stage 3 as I thought my lump was cyst (have had them them for years) so I waited a cycle until I went to GP and by the time I got to the hospital my whole breast was rock hard and painful. I actually thought I had an abscess or infection. I'm having neo adjuvant treatment so chemo first.
That's great news about your CT scan! Hopefully you can get on with treatments soon I can imagine the waiting around is difficult. ❤
Morning @kereru and the June 22 starters @Ravencat @NEWBY123 @eeyore58@LouLou81 - I'm afraid to say that I've still not started! The better news is that I had an unxepected chest to pelvis CT scan last week (because my tumour was growing) and the results were in this Wednesday - no spread detected! Still waiting for an ECG. I might see oncology for the first time next Thursday. If it's a 'virtual' chat and tour I may freak out as I'm very 'monkey see, monkey do' at the moment! My breast surgeon is still uncertain as to what order of treatment I still might have, I'm getting the impression that my tumour is already behaving in a non-standard way. She's told me that it's hardening off - I'll call the advice line later to ask what that means. Anyhoo, still hoping to sneak under the wire for June as you all feel familiar now....I'll let you know! Good luck and hugs to you all. x
Just had 1st chemo. Was advised that my hair will start falling out next cycle this might happen even using the cold cap.
Quite a few of you on this for forum have had help with head attire etc. How did you get this help ?
Hello all . I have just had my first chemo on the 22nd. I am doing 18 weeks in 6 cycles. I cut my hair short and tried the cold cap. It hurt for the fitting for 5 mins (I have spinal problems ) but then all went well. I have been taken hrt for 30 years and am doing cold turkey so red faced with all over sweating. Nasty. But.. I was actually normal for a few hours with the cap on. Fantastic !!
When I got home I didn't want to sit down at all after 7.5 hours! This morning I woke up all heady with neck pain lasted all day. Accidently took a few tablets the wrong way round so dreading tomorrow. I have now started my cancer diary and downloaded the free cancer app which will remind me. of all treatments and appointments. I have vascular dementia so must be very careful.
I am very familiar with our oncology unit as hubby has had leukaemia for 6 years now. So we are having to cope with 2 lots of treatments and appointments. So so confusing.
Here's hoping all goes well for you all.
Nice to hear that you all got through all your treatments today (and yesterday) ok - I am even starting to feel a tiny bit left out (haha); I just want to get on with this now!
@LouLou81 I can imagine it must be very strange waiting for the side effects to kick in - I am watching with interest as just a few days behind you. Maybe you will get off lightly, you can only hope 🤞 How was your haircut btw? I expected to feel sadder about cutting mine but actually it was quite empowering feeling like I was taking some control over the situation. It looks ok too. And let's face it, it's only hair. (Remind me that I said that once I am on the floor crying about bald patches 😂)
@eeyore58 another one down for you - that means one less to go 😊
@Eowyn four attempts to find a vein doesn't sound much fun, hope you are feeling ok today 💮
I had my chemo induction over the phone today instead of in person as the hospital was trying to take the pressure off staff caused by the rail strike. It was a lot of overwhelming information and so much about the side effects I have to say it ramped up my anxiety quite a bit. Plus a bit weird being given the chemo unit tour verbally... 'when you come in you will see on the right.. etc'. But now I'm mostly thinking roll on Monday, let's just get this moving.
I have been feeling quite rubbish physically today and hoping it's side effects from the Covid booster jab that I decided to get yesterday - and that I'm not actually coming down with Covid (or anything else that might delay treatment) from spending hours in a crowded hot and sweaty gym hall over the weekend watching my daughters' gymnastics competition!
Hang in there everyone, every day that passes is another day of 'getting through it' however that looks.
Hi Ladies, not long back after another long afternoon at the hospital again, 4 hours this time as i had another skin reaction, on one arm in a patch, only lasted around half an hour then it vanished, same as last infusion ...atm feel a bit woozy from the pre meds/piriton but that is starting to subside now and my throat seems a bit dry and scratchy, never had that last time but that seems to be going since i got home, @LouLou81 glad your chemo went well and i hope the chemo treats you well in the upcoming days, take care xx
Hi ladies, how are you all feeling? Hope today's treatments were kind to you.
I had my first EC today. Feeling fine so far but feel like I'm waiting for something to happen? How long before side effects kick in?
Hi @kereru thank you ...im off to have my 2nd weekly dose of poison in a minute, very nervous for some reason, let you know how i got on later, take care everyone xx
Chemo went well once they finally managed to cannulate me - took four tries and three different nurses to find a vein! My veins don’t ever play nicely! But session itself went well and there were some nice chatty patients this time which helped pass the time.
Making myself a medication chart today rather than the post it note system I used first round, that way when I ask my husband to pass me a drug he’ll know which ones I mean -well he’ll have a chance anyway!
Sending 💪 to those with chemo today and hope everyone in the group is doing ok x
Just wanted to check in before passing out for the night, hope all your chemo-related adventures today have been manageable.
@LouLou81 you have clearly been through a lot in a very short space of time, so not surprising that you had a 'breakdown moment'. I have had much longer to get used to things - to the point where I really wish we would hurry up and get started on this thing now. But I have had several breakdown moments, and am sure there will be plenty more. I hope you have recovered a bit and that getting the PICC line put in today was ok.
@Eowyn I hope your second round of chemo went smoothly and you are feeling ok so far. The bald Barbie sounds great as does getting your daughter involved as your wig and scarf stylist! Mine is looking forward to me becoming a mum who wears makeup (having been pretty minimalist on that front most of my life) and says she will do my eyebrows and eyelashes (and bright red lipstick) once we get to that stage. You sound very organised with the beanies and wigs etc.
I was meant to be going in to visit the chemo unit tomorrow and have my induction session but they have changed it to a phone appointment because of the train strike.
@eeyore58 I think you are up for another round tomorrow, best wishes to you
I had my breakdown moment for the first time since my diagonise nearly 2 weeks ago yesterday and typical me it had be oh so dramatic and over a small thing. I had to go back to the hospital to get a scan on my other boob as Oncologist felt something and instead of just sending me for a scan they booked me in for the whole breast clinic again, I waited 3 hours and the waiting around gave me too much time in my own head and I couldn't stop crying. The patients/reception must have thought I was a right princess sitting there in floods of tears just because I had to wait for a scan slot. 🤦♀️ They did find another small lump which they took a biopsy from so then that set me off again. But today I'm back with my practical positive head on again 🙌.
@eeyore58 I hope you're feeling OK. I haven't started yet so I have no experience of those drugs though I'm also due to have paclitaxel so I'm following your comments. Thinking about you. ❤
@kereru It's been really quick for me as I was only diagonised 2 weeks on Friday but as I'm having chemo first it's all been rushed through. I'm also having my hair cut today (Scissor Sisters 🤣❤) but I'm going to bob it first so it's not such a shock I've never had short hair before. Good luck!
Hopefully the cold cap will be great. My oncologist said for me to do it but I had already built myself up to not have it and then when they said I had to be at the hospital at 8am to do it it confirmed it for me as I would need to find someone to take my son to nursery.
@Eowyn Looks like we are the early morning posters. Good Morning! Great idea about the Barbie - I love that! Did you get your cheaper wigs from Shein? I've ordered a couple from there but not sure how they will look. I think the reasoning behind the satin lined (or satin pillowcase) was if your scalp was sore but as I don't know yet how it feels I have no idea if that's a thing or not. I didn't think about their being pressure - learning everyday from you all.
I hope today goes as well as it can. ❤
I have two bamboo beanies - not satin lined but been great for this warm weather. Worst bit is the between phase as scalp hurts with any pressure so sleeping is tough. I’m helping it out more now with combing and some scalp balm my wig hairdresser gave me. I’ve got some fun cheaper wigs to use and ordered my fancier one with my NHS prescription. Had the chat with my 7yo about hair loss and found a Barbie on Amazon that doesn’t have hair which my daughter thinks is great and beautiful. She briefly lip wobbled about my hair going until I explained it will come back and that she can be my wig and scarf stylist which she loves as it’s her dream to be a hairdresser.
Did school pick up in a wig yesterday - first day out with one and I felt much better than I have for the last week when I’ve been hiding under a baseball cap.
Chemo round 2 today - just wearing a light headscarf for that so I don’t get too warm.
Hope everyone’s effects haven’t been too bad? My nurse said it sounded like my side effects had been reasonably mild and that hopefully this round would be same. Fingers crossed although you never know how your body will react do you?
Sending positive vibes out to you all x
Hi @kereru ...i did look through some posts from a few years ago and yes some did match my experience also i spoke to my onc after i wrote my post (she rang me to find out how i got on with it, like they do just before next chemo) and she also confirmed that this can be typical side effects of both paxiltaxol and herceptin also im actually a big wuss when it comes to anything that causes pain ect, but i did find it quite manageable, which was a surprise to me lol, im a life long sufferer of GAD and im terrified of the unknown like chemo, my main concern is whether i will get a severe allergic reaction from the drugs esp when i am left to my own devises when leaving hospital at home ect, i had a bit of a skin reaction after the taxol infusion and they are giving me hydracortozone (sorry cant spell today) in with my pre meds on thursday, im so scared about whether i will get a bad reaction esp when at home after, its just all so daunting aint it 😞 xx
@LouLou81 the waiting to start is hard isn't it? Hope the PICC line goes ok. I am going to try cold capping, mostly in an attempt to save my daughter too much worry/teen embarrassment by going bald too quickly. Sounds like it's very likely to happen either way. Am also having my hair cut very short tomorrow, which I'm expecting might be a bit emotional.
@eeyore58 well done for riding all the aches and pains out - sounds quite challenging! I have no experience of your drugs; have you checked the other monthly threads for any insights?
Oh and I saw a Facebook group that satin lined bamboo beanies are great for sleeping in when you lose your hair. I'm going to order from Amazon I think xx
Thank you both so much! Mum guilt is a real thing for me right now and I've not even started my treatment so I know I'll be grateful to have other people to speak too who are in similar positions.
I'm having my PICC line inserted tomorrow.
How are you feeling about the hair loss? I've decided not to cold cap so I know I really should try and get my hair cut short over the next week or so.
Hi Ladies, just giving an update a week on from my weekly chemo/herceptin on day 2 i developed some aches and pains like i had flu, also some quite sharp shooting pains here and there at times too which i had for 4 days, the aches and pains was also over my mascetomy scar, (under my arm and round my back too) all in all it has been very manageable, much better than the EC and Doxetaxol i had a couple of months back, im ready for round 2 on thursday with a bit more confidence this time, just a couple of questions to anyone who has already had paxiltaxol / herceptin, what causes the aches and pains, is it herceptin or taxol or does both cause it and do they get a bit worse after each infusion? ...hope every one is doing well, much love to you all xx
Hard for you both with young children. I am the lone parent of a 13 year old daughter so feel lucky that she is at least at an age where she can get herself to and from school/friends and make herself a basic meal etc.
But emotionally she still needs a lot of support so I am nervous about how this is going to affect her if she has a mum who can't get out of bed for days on end and there is no one else in the house to talk to!
We just have to 'roll with the punches' I guess and make the most of the times that we feel better to be more engaged parents. And they will see us facing difficult times and learn from that too.
Sending you both hugs x
My hair is now noticeably falling out - my parting has doubled in width in the space of a day. I have a few wigs ready to go and am off to put local hair loss salon today to get another. My 7yo is now my wig and headwear stylist!
im at the stage where I’d like it all to fall out now though as it’s making my scalp very tender and it’s even harder to sleep.
otherwise doing ok but tomorrow is round 2 so expecting a low week to follow x
Hope the first session goes ok @LouLou81 - I have my second tomorrow and I’ll be thinking of you on Thursday x
I have two little children so if you ever want to rant or chat about mum stuff dealing with all this I’m here too - my girls are 7 and 5 and both autistic so it’s been tricky as we have to keep to routines as much as possible for them but in some ways that’s been good at making me get on with some stuff. On the low days they’ve had more tv and sofa cuddles than usual but that’s ok and you do what need to - I figure we have quiet days when I need rest and that helps give me the energy for my better days when I can play more actively with them both xxx
First session is Thursday for me. Having my PICC line put in tomorrow.
Half of me just wants to jump in and see if they can fix this but half of my is scared on how I'll function and how much of a Mum I am going to be to my 4 yr old.
I'm going for a scan today as oncologist felt something in my opposite boob, praying that it's nothing 🙏
Can I join you here? If all goes to plan I will be starting chemo a week today (on Monday 27th) so just squeaking in to June.
I am having AC (which doesn't seem that usual from reading on here) for the first three months which is apparently quite hardcore, but I guess also most appropriate for 'my' cancer. Had a lumpectomy and LNB in April - all margins and nodes clear and so I was expecting to 'get away with' just some radiotherapy. But oncotype came back high and here I am looking down the barrel of six months on the chemo train. Sorry that you are all on the same train but I am grateful for the chance of company on this journey that no one wants to go on!
I am meant to be working today (from home) but feeling very distracted.
I hope all your Mondays are going as well as they can so far. Sending hugs
Hi there you’ve probably got whiplash from the diagnosis and now being set on this course of treatment so quickly. I hope you’re feeling Ok. I’ve done my first round of chemo. Didn’t mind the cold cap too much but felt very nauseous and slept poorly for first week. After that things slowly got better and now I’m in my third week I’m back to feeling almost normal ahead of the next round. No hair loss yet but I think I’m heading into the zone where it’s likely to happen. Good luck for the coming days and do let us all know how it goes. I love having this place to share thoughts at 5am which seems to be my new wake up time thanks to chemo.
Thanks for your positive feed back regarding Chemo and the cold cap.
I am due to start Chemo next month and I was dreading it and the possible side effects.
Please keep in touch,
Glad it went ok @Mandi1 - hope the next week isn’t too hard on you side effects wise.
I was meant to have my portacath fitted yesterday but it got cancelled - I really do have bad luck with procedures like this 🙈. Rescheduled it for next month so Wednesdays chemo will have to be via cannula again and hopefully they won’t take so long to find a vein again.
Day 18 after first round and I’ve noticed more of my hair coming out. Not large clumps yet but noticeable number of strands each time I touch my head. Been making myself some more headscarves and beanies today, and I’ve an appointment for the local wig salon next week. It’s been a positive week and felt good apart from the blooming hayfever and heat.
Round 2 on Wednesday, and have my second zoladex injection on Thursday - I’m dreading that more as the first one was really painful so fingers crossed the GP surgery nurse is better than the hospitaL one at that.
Sending you all good vibes and hope treatment is going ok for everyone xx
Hi, I had my first chemo session yesterday morning of EC. Did the cold cap, yes first 10-15 minutes are strange and a little uncomfortable but soon forgot it. Especially when the toast came round just after I started.😀 Wondered why everyone was saying about the heat in the room until I had the cap off. Definitely was the best day to have it. Home and okay, currently no side effects. Scared to go to bed in case I have them tomorrow. Hence the early morning with me typing this. Hope you all have a well weekend. xx
Hi ladies, well i had my 1st infusion of paxiltaxol and 1st herceptin injection yesterday afternoon, i had some woozy headiness for a few hours after which was from the piriton i had, also after the paxitaxol was put in i developed some red blotchy spots on my arms and back of my shoulder blades but it quite quickly went after about half an hour or so the chemo nurses wasn't to worried about it but they said they are going to put some added meds in next week before infusion to stop it happening again ...i woke up feeling quite normal with no side effects this morning but as its only day 1 after i'm not holding my breath cus expecting more to kick in throughout the next week lol, anyways hope everyone is doing well xx
I am due to start chemotherapy next week - I have a 16 week plan 4 x EC and then 4 x Paclitaxel. I was only diagonised Friday and am still trying to get my head around what is going on.
Any tips would be appreciated x
Good luck - hope it goes well. I was recommended to take some paracetamol before cold cap. When I tried it the first five/ten minutes were fine and then the cold hits like an ice cream headache, then by 30 minutes you don’t really notice the cold that much. I did find that it dripped a bit down my back so keep the towel they use when they prepare your hair and use it on your shoulders.
Sending good thoughts for your first treatment x
Hi Ladies, i seen my onc today and starting my chemo at 2.30pm tomorrow, so very anxious today, ill be having 12 x paxiltaxol, weekly with no breaks in between and im also having 1st herceptin in with my first infusion, then once every 3 weeks after that for 18 cycles altogether ...has anyone else started this month yet, if so, how are you doing with the chemo so far xx
Morning, I'm yet to start so not a great source of advice but hope to learn from others. Sending you a big hug though. x
Hi, I am a newbie on here and start my chemo on Friday. Having Picc line fitted tomorrow. I have already had two ops March and April and am cancer free but as it can travel via the blood I am now having chemo, six sessions of EC and then radio. I sm going to try cold capping as I have waist length hair which I love. Any advice would be mutch appreciated. Good luck to you all x
I’m relieved the line is out - it was causing me too much pain and it’s nice to be able to have a proper bath and relax. I have an appointment to have a portacath put into my chest next week.
Forgot a good tip for the filgrastin injections - pop some germolene on the area five minutes beforehand as a local numbing agent - my nurse suggested that and it’s really helped even if it’s just a placebo effect 🤣
how’s everyone doing tonight? Xxxx
Sending you positive vibes too ❤️ removing the line was obviously not what you had planned for, do you think you might try it again? I've written 'gingernut biscuits and children's toothpaste' down as top tips. Thank you for sharing. x
So I had a rocky start - first day of chemo had to be delayed due an issue with my PICC line causing me too much pain and having to be removed. Had first round on 1st June. first few days I felt tired out, days 5 and 6 were the bad days for feeling nauseous and exhausted. But feeling better this week - more energy and managing to eat again.
Ginger nut biscuits helped when I felt really nauseous- I used them for pregnancy sickness too. I’ve bought some kids toothpaste as I couldn’t tolerate mint one while I felt sick.
I decided against cold cap in the end - on the day I was meant to start chemo they had me plugged in and left on for five hours - ice cream headache but not worse than that but I didn’t like the feeling of being plugged in and unable to move properly, I also didn’t like the extra time it was adding to treatment.
tonight is my last of the filgrastin injections - I’ve found ibuprofen worked for the bone pain with those so far.
sending you all positive vibes ❤️
Morning everyone, thank you all for sharing your experiences.....sending hugs to you all.
I've still not even spoken to oncology but I have been re-mammogramed, had another ultrasound and a titanium pellet put in my tumour. After all this waiting my tumour has of course grown and a lymph gland is up. CT a week today and waiting for an echocardiogram appointment to be sent through too!
I was dealing well with the whole thing but waiting so long is making me fearful.
Might have to join the 'July starters' at this rate!!
so I had my first chemo on Monday and have been feeling very sick ever since. On the day itself I felt very pleased with myself for having got through it and tolerated the cold cap but I have to say that (despite plenty of warnings) I wasn’t expecting to feel so horrible afterwards. I have to go back to the breast clinic today as MRI found another lump in my other breast so need ultrasounds and biopsies so hopefully can pick up more anti sickness pills then. Anyone have any tips on what worked for them countering the nausea. Did you have your chemo yesterday @eeyore58 ? If so I hope it went better than your last lot. So great that you are cancer free - I am keeping that idea in mind as I go down this treatment tunnel. Ravencat xx
Hi @Ravencat, hope you are doing well, i couldnt have the chemo because i woke up with a sore throat and runny nose but i spoke to my onc and he said i will be having 12 x weekley paxiltaxol and herceptin once every 3 weeks for a year altogether and then rads after, not sure how many of those yet, i should be starting the chemo on weds 8th june, just waiting for covid and blood tests appt, no im not cold capping as my hair was shaved off a few months ago before surgery, i had two chemos before surgery, one was ec and i couldnt tolerate it so he changed me over to doxetaxel and that was even worse than ec so onc decided i should have mascetomy brought forward, then go from there, histology report stated that 17/24 nodes had cancer in them but thankfully no spread anywhere else as i had pet/ct/ radioactive mri, just after diagnosis back in jan this year, im cancer free now and having the chemo/rads to mop up any (if) stray cells have gone travelling around my body, just hope this next lot of chemo is kinder to me xx
Thank you @Ravencat ....the diary is a great idea, can't wait for my Monday appointment, as you say....the waiting has been so stressful. x
Hi @Pollyannasglad I’m glad you’re getting on the chemo bus as you call it. Waiting around to start treatment feels stressful to me. I don’t have any more of a treatment plan than you really. Been told it will take around six months with the surgeon checking in around cycle five to see how the chemo is working I guess. I imagine that they have to play it by ear to some extent in terms of how you respond to treatment. I plan on keeping a diary so that I can see how chemo affected me on different days as that seems useful to be able to have more of a sense of how your weeks will play out and to be able to plan things - something the team suggested to me - and imagine they may mention to you at your briefing.
Morning @Ravencat @eeyore58 and @Eowyn at long last things are moving for me and I'm grateful that I'll be able to have your company through all of this. Bit of a hoo hah getting on the magical chemo bus but I'm in the system now. On Monday afternoon I'm going to the clinic for my first pre-chemo assessment (and briefing?)...not actually had the letter yet but a brief text said to set aside three hours. I'm guessing it'll be bloods, maybe more scans as the text mentioned 'no talcum powder'? Having been delayed I think/hope it's going to speed up now. I'm interested that you mentioned morning sickness@Ravencat as mine was terrible too. On Friday I'd already booked to have my very thick, shoulder length hair cut into a crop ..... wasn't sure about cold capping but if I do go for it, it'll be easier for me to manage. @eeyore58 I too hope your first session was 'ok'. I'm guessing you might be exhausted today, what a huge day for you!
Do you all have full treatment plans laid out for the next months? All I've been told at my biopsy reveal consultation was to block out 8 months for chemo and surgery in that order. From what you said @Ravencat I'm guessing that more meetings may follow for me through next week.
Warmest wishes to you all. x
Hi @Pollyannasglad @eeyore58 and @Eowyn good to meet you all. I’ve spent the last few days having meetings with the oncologist and a nice support team in the department who’ve given me a huge bag of leaflets about hair loss and fatigue and all the other horrible side effects we’ve got to look forward to (maybe). Apparently some people breeze through this but I’m not optimistic about being one of them - partly because I had terrible morning sickness when I was pregnant - but Ive been told I’m on the best anti nausea stuff so we’ll see. @eeyore58 I think you had your first one today so I hope you *did* breeze through it - or that at least it wasn’t too bad. Are you cold capping? I’m going to give it a go so let me know how you found it if you are too?
Hello @Eowyn ....I'm a newbie too really. Found my lump 8th April and although I have diagnosis, not a sign of treatment yet. Hope to hear all about your chemo experience so that I'm prepared. xx
Hi @Ravencat im starting chemo on weds the 1st of june, not sure how many or what im having yet got to see my onc tuesday (the day before) to tell me
Hi, I’m new to the forum - I start my chemo next week too - not feeling too nervous about it. How are you doing?
Just catching up with your posts and realised that you did get your treatment plan. I'm hoping I start chemo in June so perhaps we will be able to exchange experiences and top tips!