I had a virtual call with one of my trust's hair care team which was organised by my BCN. We talked about hair loss - the practicalities and mental health aspect. Then about style etc. though I knew what wanted.
Only thing was I couldn't try anything on and couldn't see the actual colours... porridge sludge (the colour I received) is not and never will be platinum blonde!
I'm sure your s-i-l's BCN will be able to advise.
If she's not ready to join yet, it's good she has you to help her through this difficult time.
I finished chemo in Jan 2020 and now my sister in law has also been diagnosed and started chemo last week. She’s having 4 cycles of EC every 2 weeks and then 12 weekly cycles of paclitaxel. I’ve passed on the details of this amazing site but not sure if she’s up to signing up yet.
Anyway I was just wondering what you are all doing for wig fittings? When I was diagnosed I was referred for a wig appointment but I wasn’t sure what was happening now in Covid times? She’s using the cold cap but I’m not sure if she will be able to stick with it as she’s having such regular chemo, she’s not been given any info as yet xx
Well Hi folks
had my fist treatment on 12/2. DoceTaxol for 3 rounds then FEC for 3 rounds - it was meant to be the other way round but my DPD deficiency test hadn’t worked so a last minute switch which didn’t do much good for my nerves.
However I am feeling fab. Yes 90% fab. Hair looking good - shoulder length and fine and I am desperate to keep as much as possible. I am 50 with kids 13 & 11 so I don’t want them to see me differently. Not vanity - more about control & being strong and healthy.
Cold- cap tips - electric heat pad, layered cloths / poncho or blanket that is loose as I overheated at one point and went a bit woozy. Meditation app - find Yoga Nidra Network on Facebook- free and silky sleepy voice to keep you distracted- or music or chat - if you can tolerate 15 mins (thick hair so they took longer with me) then it is just numb and you’re there.
Doing lots of dog walks and once the steroids are done I am hoping for slightly better sleep and less constipation but dealing with that through food. Flaxseeds in porridge and sorted! Loads of veg and water.
we can do this - I suspect I won’t be doing this well throughout but I will take today! Always hold onto the good days
sending you my best
@CrazyCatLady/ Sam, Twit woo. You look absolutely lovely. Clever daughter, brave you. Lots of good wishes and 🤗 for today. Hope it's plain sailing. 🤞
I'm going to work this afternoon! Agreed with my boss we'll play it by ear - well brain really. There's a huge focus on wellbeing at work at the moment so she's laying it on with a trowel. I want to work for my wellbeing and I feel well enough today. Be good if I can do some everyday this week. So when I've finished watching the cricket I'll get ready. Tea's made - I knocked up a cottage pie base during the tea break. That actually tells me I'm ready to work. Last week it'd taken me hours. Pity I can't really taste it!
I hope you all have trouble-free weeks. Enjoy the warmer weather.
Love AnGELa x
Hi Alice...thank you and glad you're doing OK xx Nerves now kicking in but know I've just gotta get on with it. Got full kit bag ready and diary/note book to write everything down as I will instantly forget if I don't 😄
Not cold capping as advised may set off my migraines. So going to embrace the baldy locks look xx
Hope the rest of the week treats you kindly and you get some better sleep now you're off the dexa xx
Good luck @CrazyCatLady for your first chemo cycle!
I had my first cycle 5 days ago on 11/2/21 last Thursday so I’m only slightly ahead of you.
I had the cold cap and tbh although it was really horrible it wasn’t as horrible as I thought it might be, I prepared myself for the ultimate worst and it wasn’t quite as bad. The first 10 mins is the worst, be prepared with things to distract you, the nurse, someone online, music, anything! I tried to play scrabble online but my brain wouldn’t work lol 😂
so in the end I chatted to my husband online (waiting in the car park) shut my eyes, gritted my teeth and just held on and within minute 5-7 it started plateauing off and got better. I’m not sure if it will work but you have to take that chance and if I can hold on to my hair with some thinning then I’ll be happy!
I had a woozy head but no sickness, haven’t slept that well, probably the steroids but off them from today so watch this space. Had to give myself my first injection in my stomach of Filgrastim which wasn’t as bad as I thought either 😊
It’s all a steep learning curve but we’re all get there.
My main problem has been remembering everything that I was told in the chemo unit, I think it’s the combination of chemo’brain fog, age, stress, menopausal brain so really wish I could have had my hubbie there but I’m getting there. You will too.
So today's the day...Cycle 1, Day 1 (H&P) and first dose of dexamethasone coming up this morning too.
Had my preparation haircut done by my daughter and it's turned out pretty OK, despite her nervousness in actually doing it.
Hope you are all doing well and side effects being kind to you.....let's get on with this crappy bit of the process now....day 2 tomorrow for the T&C.
I felt dizzy too and light headed particularly on my low cell days. That’s what I find scary about the whole thing as I don’t know how I am going to feel from one day to the next.
I am going to try and persevere with the cold cap. I was told if I could cope with the initial 30 minutes then it should be ok and so it turned out. However the next week will determine if it has helped me in any way or not. One if the nurses told me that now I should view my hair as a protective covering for my head and not something to be styled anymore which I thought was a bit harsh. I have always had shoulder length hair which is my security blanket so the thought of not having it fills me with dread as I will have lost a big part of my identity. It’s all very well for people to say “it’s ok it will grow back and pixi crops are so in”. With the best will in the world my hair won’t grow back to its current length for a long time and if I wanted a pixi crop I would have one! Anyway people are trying to be helpful but feel I could write a book of things not to say to someone. Another nurse classic was when she told me chemo would be beneficial to me “now don’t let this information ruin your weekend just park it for now”. Felt like saying it’s actually ruining my life right now but let’s not split hairs! Anyway am ranting so will get back to the point!
I got various anti sickness meds to take at home as well as steroids. The injections were for 7 days starting 2 days after I got home. Called Filgrastim I think and they were to encourage production of neutrophils in my white blood cells.
Thankfully have started feeling a bit more like myself the last couple of days so long may that continue.
Hope this helps.
I had such a better day yesterday - realised I felt just about normal in the evening. I so hope that means that lying on the sofa is all I need to do for the duration! Not sure what my head hair's doing - I think it's thinning but I've so much fine hair it's difficult to tell. Body hair definitely going - I spent much of the afternoon admiring my smooth arms!
Fingers crossed for some warmer weather, I so need to get some fresh air. It's been too cold and I've felt too ropey.
@Kaz11 we're on the same treatment. I'm not cold capping. You're a day ahead of me (my 1st EC was 5 Feb). I felt very dizzy on Wednesday - didn't feel safe at all.
Interested in what injections you have - I see others have them. My take home meds were steroids tablets for 3 days and anti-nausea when I need them, which I do use if I wake up a bit blurgh. I find if I wake up without any hint then I'm OK for the day.
Gosh @Teagold your feet can't have hit the ground. What a whirlwind and shock for you. Top tip - listen to your body. I'm 10 days in so no expert but if my body says rest, I do. I'm finding this so hard to do as I've always something on the go. But if i do, I don't feel as ropey. And drink, drink and drink some more. I'm getting 2.5l in and my skin has never looked so good!
I hope everyone has a good, restful Sunday.
From GP to first chemo in two weeks!! I start on Tuesday next week, got my assessment appointment tomorrow. Spoke to my oncologist on Friday he said it will be 12 weekly paclitaxel with carboplatin every third week then four cycles of EC. At the moment I’m feeling pretty ok about it, just hope it does it’s job!
Any practical tips v gratefully received. I’ve been told I can try the cold cap but it looks like then I need to take extra warm stuff? Also read a bit about black nail varnish, has anyone been trying that? Has anyone found that there are any foods or drinks that help with any of the side effects?
thanks a big hugs to everyone here
I am new to the site and one of the lovely ladies who replied to my post on the general chemotherapy forum suggested I come onto this one as I started chemo on 4th February.
I had a mastectomy in December and until my oncotype dx test was led to believe that radiotherapy was the most likely option for me. I had this in my head with an end date in sight and was then devastated to hear that I would be getting chemo. I have been told my the medics that this is my insurance policy as my cancer has been removed and this is to mop up any stray cells which may have escaped and they want to avoid them setting up home somewhere else. I was hormone positive, HER2 negative and not in my lymph.
Had the first EC on 4 February. I have to get 3 doses of this over 9 weeks and then 9 weekly doses of Paclitaxel. I managed to tolerate the cold cap but it remains to be seen if this will help me keep any hair in the long run. Wig and head coverings bought anyway.
Have felt very lacking in energy post treatment. Appetite gone so am eating purely for fuel at the moment not because I am enjoying it. Had a particularly rough couple of days during my low cell days (7-10) post treatment. Dizziness, spasms of pain and heart going quickly. Hopefully now though my cells will be starting to build up again. Had to really psyche myself up to do the daily injections.
Anyway it’s lovely to be part of the group and thanks for all the advice so far.
im under Doctor wilson at the christie ive got private healthcare so go up to a HCA suite ward 44 every wednesday ive done 4 cycles out of 18
im having neoadjuvant treatment because im hers 2 positive at 54 i would take an hot water bottle
warm mittens and socks for the cold hands and feet gloves stops neuropathy pls dont hesitate to ring me
Glad you're starting to feel a bit better and hope today is a good day for you...perhaps you can get that walk in today xx
Lol ... wigs! Don't think I'll bother as heard they can be really itchy and hot. However, I've said I may get myself a silly one from Amazon cause you've still got to have a bit of a giggle. Sorry your's isn't what you wanted and hope you friend can point you in the right direction.
Think it could be my hair do day later today....could be interesting lol 🙂 Unfortunately my daughter's having one of her 'down' moments and been trying to get hold of her GP for a referral as she's now thinking it may be ADHD as going back through her childhood and other early history, looks like the signs were there (girls present differently to boys so it never occurred to me). Apparently being ultra-focussed is one of the signs and she was one to literally get her head into something and wouldn't leave it alone until it was perfect - which for her it never was. She also had 'rages' - funny now but not at the time! It also, in teen years, does present as social anxiety and depression - so I'm hoping she can get a psychiatrist referral to see if she can get the help she needs. The meds she's on currently (for depression) not really doing it for her now. At least I'm glad she does now feel she can open up a bit to me and actually quietly proud of her for being more pro-active in trying to sort things out.
As per my treatment, it's just the first 2 day cycle which is going to be the longest as slow infusions and watch and wait for any signs of hypersensitivity. From Cycle 2-6 it's only one day and should be around 3-4 hours each time so that's not too bad.
And finally some good news....after having covid in December, and worrying about still testing positive, had text message this morning at 4am saying my test yesterday was NEGATIVE!! So hopefully, as long as my bloods OK, all set for my Monday start!! Need to get this underway now so I can see the end date.
Take care and hope you get to enjoy a little walk in the fresh (aka freezing!) air xx
I've been asking for my hairdresser for an undercut for ages - dare I say lucky you? Obviously she refuses. Though I raised it again when she came to give me a good shearing last week... and was given 'a look'. 😁
Your regime sounds a long old ordeal. At least you are nice close to home. We can get to our hospital in just under 20 minutes if all the lights stay on green. We made a decision that next cycle, I'll drive for my chemo (assuming I'm safe!), then hubby can get a cab to pick up the car when I'm ready and drive me home.
I feel much less whoozy today 🙏 and did a couple of bits of housework. I want to go out for a walk round the park but don't quite feel safe enough. In between, I have practically not moved from the sofa. Well, except from trying on my freebie wig. Blimey, it's awful. Nothing like the photo and the colour - I reckon the person who picked it out must be coloured-blind. Platinum my eye - it's porridge coloured. Having said that, if I can be bothered to get it on properly, it'll look OK. I did sort of plonk it on a la toilet roll hider stylie in a rush. One of my best friends is a wig wearer as she has lost her hair due to lupus, so I feel a video call coming on. I think my hairdresser will be making a visit to trimming it. Perhaps I'll get that undercut!
Hope you have a restful weekend.
Morning all 🙂
So had my chemo nurse call yesterday (good 90 minutes on the phone!) and looks like they've got me in a bit earlier as my first cycle of TCHP starts on Monday....eeekk! It's strange how my stomach is now turning over as I was all geared up for a Wednesday start and it's only a couple of days early but it has thrown me a bit. But sooner it starts, etc!
Day 1 of HP (6 hours) and Day 2 of TC (4 hours)....so starting the lovely steroids on Monday morning ugh!
Plan for my hospital is that they'll call me at home to let me know when to go in at some point on Monday morning, so going to be on pins all morning waiting for that call. It's only a 10 min drive away so hubby on standby to be my taxi driver for those first 2 sessions.
Today is PICC line dressing/flush and bloods ready for chemo (still a bit tender where the needle's gone in but more uncomfy than painful but going to mention it to them when they redress it)
Daughter is on standby to give me an undercut to my bob style hair and try to shorten it up a bit. My fab hairdresser has even sent me a video done specially for me by their team to show my daughter how to do it all. So thoughtful of them....and have tried to reassure my daughter that it doesn't really matter what it ends up like as, in reality, it'll probably all be gone in about 4 weeks anyway 🙂
Hope you are all doing well and side effects being kept at bay xx
Take care all xx
Hi. Hows everyone getting on? Im on day 7 after my first round of kadcyla. I've been feeling ok, only one afternoon where I had a headache and felt nauseous. But if that's all I get, I can put up with it! I've got to go back to the breast clinic on Friday to have a new lump checked, I'm a bit nervous about that. But my nurse and consultant seem convinced it's to do with my surgery in January. I hope you're all well
thanks for the reassuring and lovely message 🙂 all of that information is really helpful.
Yes, I do have a breast care nurse who is amazing! But she said to me after I was discharged from the surgery hospital and transferred to the Christie that the oncologist would go through everything with me. They haven’t, so I wrote an email to her PA to basically complain in a polite way. They have arranged a phone consultation this afternoon, so hopefully in will get everything answered and everything explained to me. All I’ve had so far is a call to say your having this , these are the side affects, see you on the 13th, which is not on.
virtual biscuits sound great ! X
Well day 5 of cycle 1, or day 1 without steroids and no real change. Did wake up closer to 3am than 4 - I do think it's a 'time to decamp to the sofa to doze/watch the cricket' thing. Hopefully I'll get a good night in tonight. I don't feel queasy or anything, food continues to be losing its flavour, head is quite wobbly when trying to think.
I am prone to catching the light and seeing flashes and rings round things - did this, this morning. I'll need to monitor this as it's worse than usual but I think I'm over looking to get rid and the light is well weird today what with sun and snow and cloud intermittently.
If my head fog clears I'd like to attempt some work tomorrow - there's some non-taxing stuff I can be doing for a few hours.
Happy Tuesday afternoon everyone.
Welcome to the Feb team @ktruffin
I fast anyway (I eat from after midday, often 2pm to 8pm and throw a 5:2 in some weeks, I can't lose on 8:2) - was told to deffo eat before my chemo as it's at 10am and that I'm better off eating when I want to.
I'm on day 3 following my first EC and wake up hungry - got to be the steroids. So I eat, I've managed to avoid the munchies so far. Am drinking around 3l that does help fill me up. I'll update what I feel like from Tuesday when I'm no longer taking the steroids and the 🤮 more likely to kick-in. Not taking any anti-nausea tablets yet as no signs.
48 hours without food is a massive thing to do in the best of times. I suspect it needs some building up to. I've struggled doing back to back 5:2 days. I'm no expert but that can't be good for you when your body needs nourishment.
Hope you find what works for you.
Starting FECT treatment for 6 cycles on 12/2 so off to get my bloods and Covid vaccination on Monday. I am post surgery,
Cold-capping with shoulder length fine loop hair and considering fasting 36 hours Pre and 12 hours post treatment to reduce side effects.
anyone else exploring fasting regimes?
good luck all
Welcome to team February 2021. I'm on the same regime as you, though without the cold cap, and I'll be having biphosphanate infusions every 2 cycles. The plan is for weekly Docetaxol if I can manage it.
So day 3, so far so good. I posted about my experience when I was home a few hours after the first session. It's been pretty much the same though no whooziness anymore and the spaced-outness has just about gone. I've been getting 3l fluid down me, 2l is plain water, and going about my usual business albeit even lazier than usual with all the lovely 🏏 and 🏉 on the telly. Getting the steps in and wearing the carpet out by going to the loo with all the liquid... there's an age thing there too. 😉
Food's no problem - I did wonder how our usual Saturday chip shop fish and a handful of chips would go down... a treat 😋. I could be the tiniest bit queasy if I think about it but doing stuff or having something to eat does clear it.
I fancy my taste buds could be a bit shot this morning. Sunday treat grapefruit juice and bacon sandwich not quite as tasty as usual and my favourite coffee's slightly tangy.
That's my experience so far. 48 hours in.
I'd say, do what your body tells you and if you just do one thing, drink, drink and drink some more to help flush you out. Oh and make lists - my brain's been a bit 🤯 since I was diagnosed on 2 December (Mx and ANC 8 Jan) and it's been a bit iffier and slightly manic (from steriods) since Friday. I've had to write down what I want/need to do to make sure I do.
Re your impersonal call. Do you have a BCN or Macmillan nurse? Have a chat to them - they can tell you everything you want to know in much better way and can answer any questions, and I mean any - no such thing as a dumb question) you have.
I hope you're treatment is nice and smooth, if not we're all here to support you, sharing tips and send lots of positive thoughts, hugs and virtual tea and biscuits (if you're up for them).
Welcome to the group. I’ve already had one treatment of TCH (with docetaxil) and also cold capping. Please don’t worry, the reality is much better than your fears about it. The first couple of days afterwards I felt ok, just a headache and really hot face. Once steroids wear off you do feel worse but just keep taking the anti sickness meds. I struggled most with the bone marrow injections. Had some great tips from the January group. Inject at bedtime and take painkillers at same time and I have also been advised that clarityn(the antihistamine) does wonders in keeping the bone aches at bay but I haven’t tried that yet.
cold cap was very bearable and so far been successful though I have noticed a bit more shedding this morning. My hairdresser is confident I will keep about 30% of my hair but who knows!
please feel free to ask any questions as I know I also felt so in the dark about what to expect and like you didn’t have a positive first meeting with oncologist - have my follow up on Tuesday so hope that’s goes better If you haven’t been offered one, I definitely recommend a PICC line - makes very thing so much easier
good luck xxx
Starting chemo on the 13th at the Christie in Manchester (x3 EC and X3 Docetaxol once every 3 weeks) with cold cap. No idea what to expect, as my oncologist (whom I have never spoken to!) got her colleague to do a telephone appointment that felt rushed and so unpersonal. However from what I understand the tumour has been removed, lympth nodes are all clear and the chemo is to prevent it coming back in the future and to zap any stray cells that have escaped undetected.
So ladies, please feel free to let me know any tips and tricks that you have picked up after your first rounds.
Hope everybody's treatments are going as well as can be 🙂 xx
Fab news @Lewy2803, that's so good to hear. 🥳 💐
Please take it steady though and not overdo it.
You've got this - fab attitude. 👊
Forgot to say, didn't have biphosphonates today so hoping I 'get off lightly' this first time. Baby steps and all that.
hey everyone - quick update from me......... I feel alive today!!! Day 11 post treatment and other than a little weeing issue (bladder urgency) I feel top of the world! What a difference! I've felt hungry and am beginning to get taste back so drank squash today instead of milk. Makes me realise that I can do this now ... a week or so of feeling blurgh each month I can handle if it's going to save my life!
Hair still hanging on in there ... tho I think I'm starting to shed down below if you know what I mean.
Loads of love to you all ... stay strong xxx
Happy Friday everyone. I hope you're gearing up for whatever you want to do (or not) this weekend and feel well enough to enjoy it. 🤗🙏
I just got home. I'm ok. Took about 2 hours as my stuff hadn't arrived on the ward so couldn't start anything until it was. Wasn't too bad in the grand scheme of things - except I was weeing for England as a strong cuppa I asked for, a strong cuppa I got! I suspect if I took sugar, the spoon would've eroded!!! BP a bit low from either the steroid injection or an antisickness brick I had to swallow!!! So I'm a bit whoozy. Bit spaced out too. Feel a bit sleepy now.💤
I got my head round that I can do the blurgh days - thinking it's for a few days for a few months. My husband has Crohn's so blurgh most of the time.
Totally recommend thoseI Pukka sleep teabags. I had a cup last night. I did think it'd be like drinking stale grass. It was really rather pleasant. I fell asleep more quickly than normal and I nod off dead easy.
Talking of which, I need to do my arm exercises, drink my coffee and then I'm going to lie out on the sofa and snooze. I had a proper pillow and lovely soft fleece all ready.
PS, got red wee already. I must have cracking kidneys. 😉
I have found Sara's book and website very useful: http://www.tickingoffbreastcancer.com
I read "Helen's Melons" shortly after my diagnosis was confirmed, and have a copy of The Complete Guide to Breast Cancer by two doctors/survivors.
I have slept more now that the Mon-Weds steroids have worn off - a good nap yesterday afternoon and a much less disturbed night.
I'll add more later in the day.
With love to you all as we face Friday's challenges as the Feb2021 team,
Glad to hear some symptoms are easing, even if others aren't @Lewy2803. I do hope you feel more comfortable soon.
@Amy1988 👋 - hope your treatment went well today. Hope things are good with you.
@HelenW I ❤️ Northumberland. Lucky you living there. We did a tour from Berwick down to Whitby a few years ago. I 😭 when I walked out onto Bamburgh beach for the first time. We stayed there in October when our swanky 5* holiday in Turkey was cancelled - then drove down to Cornwall for our second week.
I'm lucky with work - massive private sector company who pays 12 months full pay then 12 months half pay for sick pay.
Pre-assessment went well except for my foul mood as I decided to teach hubby a lesson and refused to wait for him after the time we needed to leave. He's never on time. He had 2 x 5 minute warnings then 3 x 2, wasn't even putting his coat nor shoes on so I went without him. He thinks I was being unreasonable. I've told him if he's not ready to leave by 7:25 to set off at 7:30 tomorrow, I'm getting a cab. What he doesn't know is that I've added his bank card to my Uber and Google pay accounts. 😈 Back to through the assessment - was lovely to see the unit and people having chemo didn't look ill.
Sam - thanks for the tips. We took our bath out as never used it so a soak (yuk) is out of the question. Though I've a lovely spray from Creighton's that does the job to get me back to sleep in the middle of the night. I've lemon and ginger teabags, a shed load of ginger biscuits and those Pukka help you sleep teabags. I'm getting some mouthwash from the hospital. Not sure what to do about a toothbrush. I hate a manual one - might get a child's electric one. I'm famed for my big smile with naturally white teeth. Can cope with my hair coming out, not my teeth looking grotty.
Oh well, this time tomorrow... Might try one of those sleepy tea bags now.
Hugs to you all.
So I've picked up a few tips and tricks from another group I'm on with how to deal with some side effects, particularly the bone/joint pains and the taste issues.
Stock up on Epsom Salts (the unscented sort) and add in a few drops of essential oil such as Lavender, Frankinsense and have a good soak for 40 mins or so (and use 2 cups per bath for best effect). Also been recommended to use a body spray using diluted magnesium flakes (again with drops of lavender oil, etc) and use before bed to help your body relax so you can get better sleep.
As for the tastes, seems like mint tea or ginger & lemon are good stand bys to have in the cupboard, as well as frozen pineapple chunks. Also tea-tree toothpaste suggested (but get the mouthwash from your clinic if you are getting sores). Also use a soft toothbrush so as not to damage gums and cause bleeding.
@Lewy2803 hope today's a better day for you good tip ref the painkillers/clarityn pre the fligrastim jabs! and @Amy1988 good luck for today too with the Kadcyla. @HelenW hope you sleep better tonight and hoping you have an easy ride with the side effects. @Gelbel good luck for tomorrow too xx
Take care and safe and smooth journeys xx
I am starting with six three-weekly cycles of Perjeta, Herceptin and Taxotere. These were given by cannula on Tuesday, with an anti-sickness drug. I started taking DulcoEase yesterday afternoon.
I am managing to drink 2 litres of water a day and walk between the kitchen and sofa for a few minutes each hour. My appetite has been OK so far.
I had my last steroid tablet for this cycle yesterday evening, so am hoping for a little more sleep tonight ..... but bracing myself for side effects over Friday and the weekend.
I haven't decided whether to cut my hair ahead of time (above shoulder bob at the moment). I have a few hats, caps and headscarves gathered together for later in the month. I suspect that I will only wear my wig for a few key zoom meetings, but it is comforting to know that the two I selected during my consultation can both be picked up on Friday by my husband so that I can make a final decision here over the weekend.
I am 53, born and brought up in North Yorkshire, followed by c30 years in London, before moving to coastal Northumberland. I work in the charity sector - specialising in the overlap between climate change and investment. My trustee work often takes me to Scotland in more normal times.
Very best wishes to you all and especially those starting chemo today/tomorrow.
hope all are doing ok! I’ve had a few rough days with diarrhoea! (Days 6-8 post treatment). Docs not sure if a bug or the chemo but blood taken at A&E and all was fine. Only advice I can give is that even though you don’t feel like drinking, keep drinking! seem to be on the mend today though.
ive struggled with the bone marrow injections - great advice in the January group to take with painkillers before bed. Another piece of advice today from a FB group is to take clarityn the hay fever med an hour before you inject. Too late for me on this cycle but will def try for next time. I think I found the side effects of the injections the worst. Bone aches that just won’t let up / makes you really miserable.
Second cycle is on thurs 18th so in line with some of your first treatments. Pls ask any questions you want. So glad they are splitting your treatment @CrazyCatLady as I was in for 11 hours in the end which is too much especially as you are feeling so anxious.
I cold capped with the tightest fitting cap I could (so tight I couldn’t open my mouth to have a slurp of drink!). So far I’m day 10 post treatment and no shedding. Think my nose hair has gone as nose starting to dribble and is very tender inside. Also have developed a cold sore - never had one before. My hubby is going to cut my hair today!! My friend is a hairdresser and is going to FaceTime and instruct him. My hair is very thick so will be good to lighten it up a bit. Getting used to the grey now - I wasn’t going to pay for my usual highlights if it was going to fall out anyway! I haven’t been offered a wig!!
anyway lovely to meet you all - there is more of my story on the jan group of anyone is interested. Take care everyone xxx
Hi. I will be having kadcyla (trastuzumab emtansine) from thursday this week, I'm a bit nervous but at the same time ready to get started. I've already had FEC- T chemo which started last August, but after my surgery it has been discovered that my tumour hadn't responded very well to it. So now they're trying me on this stuff and I will also be having radiotherapy in the next few weeks. I just wanted to introduce myself and I can see some familiar faces already which is nice too!
Isn't it great that your team are wonderful. I must admit this whole experience has been eye opening from the patient-centred approach from amazing people who just have our best interests at heart.
I've just handed my work over. It's been agreed I will approach a member of the team to pick something up if I am in work. It's totally down to me - thankfully my HR case handler has experienced all of this herself so totally gets why I'd like to work when I can.
So going to chase my wig appointment at my pre-assessment tomorrow, before Friday's first cycle - BCN said she was going to sort when she called late Friday pm. Had my hairdresser come and give me a pixie cut today in readiness.
Here's hoping our side effects are few and far between.
PICC line done - took all of about 10 mins so home already. Just achey arm as expected so paracetamol later. Seems like my trust don't give the waterproof covers now though so trip to pharmacy later.
And, FINALLY!!! - got my chemo start date. Weds 17 Feb....so 2 more weeks to get myself all sorted and prepared.
Hope you all doing OK with your treatments and take care xx
Hello @HelenW - good luck with your treatment and sounds like I am probably on same as you (TCHP?) as I too am Her2+/ER+ but bilateral (the other one's ER+/PR+ but Her2-).
Getting my Picc line in this morning at 9am but as yet still not got my actual start date but guess will be within the week? If I've not heard anything by this afternoon, will be chasing up with my BCN as I need to know (my control freak element coming out lol).
My work too have been brill (small independent welfare rights charity) and I am also WFH part-time 18hr/week so plan is to do any work I can when I feel up to it but will effectively be on sick leave. Once my chemo's done I'll then let them know how many hours I've managed to do and they'll then put through my accumulated pay. I've also got holiday leave to use up by end of March and I'll be on full pay for first month off and half pay for 2nd month, then SSP kicks in). Fortunately my hubby has a Senior Management role in public transport so we won't really get too much of a financial hit.
Good luck (and fun) with your wig fitting - I've heard it can be quite a laugh 🙂
Take care and good luck xx
After HER2+/ER+ diagnosis on 7th Jan following a call to my doctor a month earlier, I started six three weekly cycles of chemotherapy yesterday at Alnwick Infirmary in Northumberland. Surgery and radiotherapy likely to follow from June at Wansbeck General. Etc.
The team is wonderful - the care at my pre-assessment in Alnwick on Friday was excellent and I felt well looked after yesterday in the four seat unit. Thank you Barbara, in particular.
I am awake early due to the second of three days of steroid tablets. Waiting to see which side effects will appear first over the coming days and weeks.
Work (my part-time paid, current secondment, and voluntary trustee work) are all being very supportive. We're experimenting with a rest week followed by a light working fortnight with good cover. Probably easier while working from home remains the norm, and during the first few cycles.
Cold cap has been withdrawn here recently due to the pandemic, but the 'Lovely Locks' team squeezed me in for a wig fitting on Saturday.
I hope to add more later today.
Hi Gel - lol sounds like how my hair used to be back in the day (different colour each month). Did do an experimental dye job using (gasp) household bleach just on my long side sweeping fringe, al la Human League - fortunately I didn't blind myself and it actually looked really good and people asked me where I'd had it done lol! It looked fab swept back and was super soft. Ah those where the days - now I've actually been trying to bring out my grey look....but the Silver Dyes don't hold very well. So once is starts growing back it will be fully grey probably 🙂
Don't think I'm going to bother with a wig....may get a cheapo one if we can ever go out again (as hopefully my chemo will be done by end of May and got a birthday in June to celebrate!) Got loads of headwear though (soft cap with a peak and detachable scarf, couple of velvet turbans and beanies plus a furry one for the cold days).
And as at 6.20pm still nothing from the chemo unit on my start date.....all this waiting is blumming frustrating! Just want to get on now.
Hope you got your cuppa and catch up later xx
Mine's shoulder-length, very parched bleached blonde (had 2 x bleach last time as I had red roots which I thought would look v strange if (when?) it falls out) graduated bob. It's fine hair but there is an absolute load of it. I'm thinking the shorter cut will make it healthier and give it more of fighting change. Also when it's short it grows stupidly fast so, again, another hope it might hang in there. I know chemo throws normality out of the window.
Waiting to hear about the wig appointment so I can start ordering - got a few lined up (hope they fit as I've such a big head - I had to get specialist motorbike crash helmets back in the day), one that I'll blue root with hair crayon. Loved my blue roots after the first lockdown, the blue wasn't a permanent dye so there was varying shades of blue all over. Hence going red in the autumn.
I've 11 June circled as the end of the 6th cycle. Nearly sniffable!
Postman just delivered the letter with the 3 EC dates. It's real now!
Right - need to chase hubby for my 4pm cuppa. Something will have distracted him.
Hello @Gelbel - oh how naughty getting your hair cut lol 🙂 Mine's sort of a mid-length bob already so not too long and I've already decided I'm not cold capping (migraines will be just one more thing to add to it all). My daughter is all lined up with clippers for when it all starts shedding and I may have a go myself with the scissors - and it if looks awful (which it probably will), then clippers to the ready.
I've just 'met' @Lewy2803 and sound like first cycle going ok so far...can but hope that's same for us as well 🙂
Driving my hubby bonkers by researching EVERYTHING - more I know, more I'm prepared, whether it's the good or the bad. He's being supportive if a bit in denial...any time I mention something he sort of shuts me down saying 'that's not going to happen'. So it's tricky trying to get him to understand quite how unwell I may be.
My head is almost ready for it all to get going...sooner it starts, sooner it's done! And I keep telling myself that 18 weeks (plus the 2 after last cycle) aren't really that long in the grand scheme. But still one step at a time and it'll be over soon xx
Take care and good luck - wishing you a smooth and trouble free ride on this daunting rollercoaster xx
Oh and yes, let's share our stories xx Speak to you soon @Gelbel xx
Hi @Lewy2803 - thank you 🙂 Glad your first treatment going well and hope it continues like this for you - the gentler the better. As at today still not had call from the chemo unit ref start dates....what's the betting they'll call when I'm getting my PICC line done on Wednesday lol 🙂
I'm geared up and ready, want to get on with it and get it over with...but then again also want to hide under my bed covers x
My first cycle is being split over 2 days with H&P on day 1 (around 7hrs I've been told) and then TC the next day (around 3-4 hours)....lots of monitoring on the first lots I believe to make sure no reactions. Which is the fun bit as I have some fab allergies already (but mainly to healthy stuff like salad veg, spinach, shellfish, etc). Think they'll dose me up with antihistamines before first 2 lots so fingers crossed xx
Welcome @CrazyCatLady to the group. I had my first treatment last week and so far not too bad. Just really achey joints which is the norm with doci I believe.
PICC line was no probs either and makes things so much easier. My chemo started the week after PICC line put in. Next treatment on 18/2
Lovely to meet you although its under horrible circumstance. Glad to know I am not on my own - though I know Lewy2803 is here as well and one cycle ahead on us!
I am so with you on chemo being the scariest. It sounds to me you are doing everything to can to be organised to face it head on even if it's a bit more complicated for you. Nothing like being prepared.
Don't tell anyone, my hairdresser is coming round to give my mop a good cut on Wednesday. You can say it's allowed under lockdown rules as it's providing care to an extremely vulnerable person. Not least needed for my mental health - while I'm OK (I think) with it coming out, seeing shoulder length hair fall out is very different to a nice pixie cut vanishing! Love to see anyone report us - news headlines if the police got involved I can tell you.
Good luck for when you start. Let's share stories - nearly Friday. 😟 My pre-assessment is Thursday, I am assuming another MRI (had one pre-op) and yet more blood taken (nearly an armful 😉) amongst anything else.
Hope you are feeling more yourself today @Lewy2803.
Take care everyone.
Hi all - so I'm 53 with bilateral NTS (ER+/PR+/Her2- and ER+/PR-/Her2+) and both tumors around 12mm but could be bigger once the MRI results in. Onco's external measuring for the Her2 one said around 3cm....eek!
I'll be starting TCHP shortly (PICC line going in on Weds 3rd) - but still waiting to hear from chemo suite about exact start dates so assume will be a few days after PICC line 😞
Going to be 6 cycles and after chemo will also have Herceptin jabs 3 weekly until Feb 2022. First cycle going to be split over 2 days with the H&P first then the TC on day 2...afterwhich will be the full set for cycle 2 (although onco did say may drop the Perjeta). He was also hopeful that as early stage the chemo 'may' shrink tumors considerably, and possibly even to microscopic levels (oh how I hope so!)
I will then have surgery (lumpectomies and mammoplasty) around 6 weeks post-chemo followed by rads 6-8 weeks after surgery. So all being well, I'll be done with active treatment around Aug/Sept 2021 (apart from the heceptin jabs and also going onto 5 years of Tamoxifen!)
Onco is aware of all my super-duper allergies as well as my asthma so guess I may also be getting antihistamines before each chemo session (as well as the dexamethasone, filgrastim injections for 7 days after each cycle and all the other side-effect meds!)....I'm going to be rattling!!
Had my Heart MRI yesterday so guess this is going to monitored quite a bit through treatment but don't think I have any underlying heart issues, so fingers crossed. Got the joys of a further breast MRI prior to last cycle too (could they have made the thing any more uncomfortable...my back ached for days afterwards and the contract dye nearly made me heave whilst in the bloody thing lol).
Anyway, I'm getting my head around it all and chemo for me is the most daunting bit....it's all unknown as to how I'll react to the treatments and other various drugs. Surgery and rads I feel Ok about strangely. Not sure about the Tamoxifen either as I'm nearly at menopause (currently peri) so guess they'll switch it after a bit onto the postmenopause one (anastrozole??).
Trying to get everything prepared and ready before treatment starts and stocked up on a lot of personal care bits and pieces as well as notebook, diary, organiser for all the info and appt ltrs, etc. So hoping I can get through the first phase of treatment with no serious complications....but not looking forward to the raft of side-effects I 'may' get. Hoping they'll be minimal but hope I'm prepared if they're a bit more intense.
Take care all and hope your journey goes smoothly xx
Great idea @donkeywoman. Probably will - I've been following all your stories. Awesome women. 💪❤️🤗
Thanks for the thought.
How was your first session Lewy2803 and how are you feeling/managing/coping?
Just found out mine - next Friday, 5 Feb.
I hope you have a good weekend.
Sorry you are here but great support on this forum. You’ve probably read that I too have already had surgery with a 3cm invasive grade 3 removed but DCIS in the margins so another op after the surgery. My nodes were clear. I started TC with Docetaxil yesterday so if you’re have any Q’s please don’t hesitate to ask. I’ve also posted on the Feb 2021 chemo starters forum as most of my treatment will be in Feb. loads of love and hope your get a start date soon.
Update form yesterday: Slept ok til 3am and have been struggling to get a back to sleep since then (didn’t help having a collie straddled over me!) so have finally given in and got up (no cricket to keep me occupied tho!) . Will make a hot drink and then try and suss out the after care drugs - oh my, so many to remember! How soon after taking the steroids do you get the moon face?!
Moving through the different topics - from recently diagnosed to having surgery and now here.
I went to my GP during England Lockdown 2.0 with an enlarged node so knew it was serious. Mx and ANC on 8 January. That's going well - op was a breeze to be honest. Got a seroma (had problems with my drain so was still draining when it was taken out) but that has started to go down today - feel much comfier in the area. I was back at work yesterday after 2 weeks off. Any surgery type questions, do ask.
Final results were: DCIS found as well as a 34mm grade 3, 31 out of 48 nodes infected, ER+ and Her-ve.
Got my plan this afternoon: 3 x EC and 3 Docetaxel with bisphosphonate intravenously. Fly in the ointment is that I had Hepatitis B 40 years ago and that could rear its head again. 🤯 Consultant all over it though. Start in 2 weeks, exact date TBC.
By-passing the cold cap - looking forward to finally getting the platinum blonde rock chick hair that I strive for. My hair's natural curly so one hint of fresh air and ping - so looking forward to that not happening. #EveryCloud Dreading other side effects.
Then radiotherapy 15 lots I think (brain was full by then) with hormones for 10yrs and bisphosphonate tablets for 3 years. I've a bone scan on Thursday - should be OK as CT scan pre-op was clear. I also need to get to the dentist PDQ as my Christmas cake decided to take a bit of tooth out the other week. 🙄
We'll do this.
Hi everyone, I thought I’d join this forum as I start my chemo on 26/1. I am hormone Negative but HER2+ So will be having TCH on 3 weekly cycles and using cold cap, with Herceptin weekly. I’ve already had surgery, a therapeutic mammoplasty, where they removed a 3cm aggressive grade 3 but unfortunately they found DCIS in the margins so I will have a full mastectomy after my chemo. Happy to share my surgery experience and as I’ll prob be one cycle ahead of you lot, will share any tips on chemo. Loads of hugs everyone xx
This thread is for anyone due to start chemotherapy this month. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
If you’re new to the forum, here’s the “Getting Started” advice: