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: