Yes I did cold cap, all ok, better than I thought, warm day in hospital so cooled me down actually 🤗
Good luck for this week, be thinking of you & let me know how your getting on 🏼 Xx
I'm sorry that you also find yourself on this journey.
How are you feeling now after your first treatment? Hope you arent having too many side effects and are coping ok.
So sorry for my late reply, I have been able to go out the last few days haha. Its been nice to go somewhere other than the hospital 😂
It sounds like you had a lovely time in London, even if you did climb all those stairs in St Pauls!! Oh wow, congratulations on your wedding 👰 that is some lovely news amongst everything else which you have going on at the moment. I'm sure you will have looked amazing & hope you both had a fantastic day.
Yes, I am also hoping to work through my treatment & like you, my work have been amazing through it all. I havent worked at all through my 1st treatment (as advised by my oncologist), but hoping to work after my 2nd treatment. However, I'm thinking I'm going to give myself the first 7-10 days to get over the treatment properly before I try to work, then hopefully will work for the remaining days until my next treatment (apart from the blood tests etc). I have also brought my laptop home, so have been working at home since my surgery & before the chemo started - I work in a large office though, so dont want to risk anything by going in until the end of the year, or even next year, depending when my treatment finishes.
I agree, hopefully by Christmas we are both feeling a bit more human again - my last treatment is currently scheduled for mid November, so the end of the 3 weeks would by around 8th December, as long as there are no delays. I think my radiotherapy will probably be in the new year, even if my chemo stays as planned.
I'm actually going to the Look Good Feel Good session this week - I have already done the nail session online and have the online hair loss session also booked in, so I should get some tips for when I need it. Hopefully you will feel ok to go to the session you have booked in, but see how you are after your 1st treatment incase you think you should change it.
Currently my hair is still ok, so will definitely be cold-capping again on Friday during my 2nd cycle - I totally agree, we need something to go in our favour through all this, so hopefully it works for both of us 😂
Wishing you loads of luck for Tuesday & hope you can manage the cold cap too - hope it all goes as well as it can. Let us know how you get on
It's a tough journey, isn't it?!
How are you feeling at the moment? Was your first session ok?
I'm feeling ok just now. I'm just petrified of infection and keeping my fingers crossed that the cold cap will save a good amount of my hair. I don't start until this coming Tuesday though.
Did you cold cap? X
It was lovely to get out and about. It was actually the first time we've done something a bit full on since my surgery so I didn't realise how tiring it would be. Climbing St Paul's Cathedral (over 500 stairs) probably wasn't my best move 🥵 but it was a lovely time!
We also managed to get a holiday in before my surgery - we actually got married 2 weeks after I was diagnosed so it was all pre booked but I was so glad to get it in before everything started!
Are you working at all during your chemo? My work have been really good with me but I just don't know what to tell them to expect! I'm taking my laptop home with me as I can do most of my job from home and I've just said that the week following I'll just dip in and out of emails when I can but I don't really know what to expect from then on. It's only myself and 2 other people in the office so not incredibly high risk! So I'd like to think that from the second week I might be able to come into the office!
I'm due to finish on 6th December so I'm hoping I don't get any delays. Would love to start feeling a bit human again by Christmas!!
I'm actually booked for Look Good, Feel better but it happens to be 2 days after my second cycle so I don't know how I'm going to feel. I'm going to see how I am after my first and go by that! Have you been?
I really hope the cold capping is worth it for you! It'd be good for us to get the upper hand and some stage in the journey, wouldn't it 😂 x
I too have been prescribed EC & Docetaxel , 3 cycles of each, 6 in total, 1 every 3 weeks
I was diagnosed with grade 3, one positive breast lump 14mm which was 22mm upon surgery 27-4-22 and one axial lymph node
It’s very uninformative I agree, a covering letter is definitely required to give a more detailed explanation and instructions 🤔
I started my first cycle of EC yesterday Tuesday 16-8-22
How are you feeling now ? 🤗
Ah that sounds really nice 🙂 hope you had a lovely weekend in London? I know the weather would have been hot, but hope you were able to do things & get out and about a bit to enjoy yourself 🙂 you definitely did the right thing & enjoyed time out/away whilst you can, before treatment starts. I went on holiday between being diagnosed and having my surgery - it was the best thing I did, as I managed to get a break before dealing with everything I had coming my way.
Yes, I know what you mean about being housebound - I was advised that my first week I wouldnt feel good, my 2nd week I would feel better but thats when my immune system would be lowest so avoid people if possible and the 3rd week would be better for going out. I've stayed out the way of everyone I could for the last 11 days, but I have a few nice things planned in from this weekend to the middle of next week before my 2nd cycle starts 🙁 hopefully I can avoid my treatments being delayed, though I know this can happen as it goes on.
I was offered a mastectomy if I had wanted it, but my surgeon was really confident of doing the lumpectomy and that she could get all the bad bits in one go, which she did 😀 it was the oncotype test which is done afterwards which showed up the higher re-occurrence risk. I did get the option from my oncologist of not going ahead with chemo at all, as the cancer had all been removed, but the test results & her advice was to go ahead with the chemo to reduce my risk of it possibly re-occurring elsewhere at a later date (incase any little cells had escaped and decided to start travelling elsewhere). So I took my oncologists advice, and even though she said I had the choice, I wanted to make sure I had done everything that I could now to reduce my risk at a later date - it was such a hard decision to make though.
Yes, I took a blanket with me, plus a dressing gown to keep me warm haha. However, I didnt use either of them as the hospital gave me a blanket & I had my hoodie jacket with me as well. It might be different though when the weather cools off a bit, but I just wore t-shirt & leggings with my hoodie jacket.
My hair is still ok at the moment & I havent had any loss so far (fingers crossed), I keep forgetting that it is still to happen ☹️ I plan to use the cold cap again when I go for my 2nd treatment next week - take some good conditioner, a wide toothed comb & a full hairband with you as they will use this before putting the cap on. I havent ordered the silk pillowcases but I have ordered the silk sleeping caps, which I havent used as yet. I have got my wig already sorted though, ready for when/if I need it.
Hopefully you will get a tour of your unit before you go for your 1st session - when I went to get my first lot of bloods done, I was shown round the unit and where I would get my treatment etc, so at least when I went it wasnt too unfamiliar when you are already anxious.
I would take some snacks with you to keep you going, as overall I was there for 4 hours - make sure you unwrap/open/put things into boxes before you go - I didnt, and trying to get into things with one hand was a struggle haha.
Have you heard about Look Good, Feel Better? They run one-off sessions to help with various things, including nail care, skin care, hair loss etc.
Thank you so much for your reply.
Sorry for the delayed response! We spent a couple of days in London, wanted to get out a bit before the chemo starts! I feel I'm going to be so scared of infection once I start that I may end up being a bit housebound!
Would a mastectomy not have been if benefit to you if your chances of recurrence was so high? Not that anyone wants a mastectomy!!
Did you take a blanket with you to your session? I don't know what to take to keep me warm!! How is your hair at the moment?
My hospital are also not letting anyone in at the moment but I've been told I'll be in pod with 5 other people! So hopefully we'll all get chatting!
I've heard the sweats are a terror! I've ordered a mattress protector and also some silk pillow cases! Apparently they help your hair too?! X
Yes! They wanted to give me an expander but said that there was a shortage on those! I've been given the same warning about radiotherapy and the implant. I'm still waiting for my genetics to come back, I'm seriously considering DIEP once all the treatment is done.
I had my call yesterday and was told my husband can come as far as reception but cannot come in, luckily his brother lives close to the hospital so I've told him to go there. We'll see how the first session goes and decide whether it's worth him taking the day off work for the rest of them! May be just as well to have my mum take me to the sessions and have him off the next day with me, he'll pay probably be more useful to me the following day 😂
Wishing you luck with everything xx
I hope you dont mind me jumping onto this thread, but I couldnt not reply when I saw your post.
I'm so sorry you found out about your chemo treatment by phone call (that is shocking), but I totally understand you being knocked sideways by this news and how you are feeling right now, as your experience/treatment/timeline is similar to mine.
I was diagnosed at the end of April, with lumpectomy/lymph node biopsy/partial reconstruction early in June. I knew I would be having radiotherapy & then tablets for 5 years afterwards, but I was told that I was able to have the Oncotype test which would determine if I needed chemo or not. I knew it was always a 50/50 chance from the result of this happening, but I thought that this was "played down" at my appointment, so to get a result of 27, which put me in the high risk category of re-occurrence, hit me so hard.
Anyway, I am also having 3 EC followed by 3 Docetaxel, and I started these last Friday. I did manage the cold cap for the full session (I didnt find it as bad as I thought), so hoping its done some good, as hair loss is the thing I am dreading as well. Luckily, I havent been too bad since the treatment - I have had a few side effects, but I have been able to manage them. The worst things for me have been the muscle aches off the injections (randomly sorted by an antihistamine) and the hot sweats (which I'll mention at my next treatment as they are ridiculous). Its now just over a week and I started to feel back to normal on Thursday/Friday.
Unfortunately, I am having to go for the treatment myself, as the hospital still arent letting anyone else onto the unit at the moment.
Wishing you lots of luck with your treatment, if you have any questions, please feel free to send a message - we can do this!!!
I did (Implant) which there's a shortage of apparently as I'm classed as average there was a possibility of having to have a smaller or larger one! Luckily one was couriered in from Bolton (I'm in the Midlands) but it seems bigger than my other one still but I'm not sure if it's because it's now in the right place, which it hasn't been since about 1990!? I do still have slight swelling at the side so hopefully in time it will look smaller. But it is only temporary as I'm due to have radiotherapy next month and it'll make the implant hard so going to see at the end what I'm going to have done at the end of treatment.
Brows and lashes are very nearly back to normal just the top lashes need to catch up with the bottom ones but it's been pretty quick.
My Husband was also banished at the front desk when I had my surgery! To be honest I don't think my Husband would have coped with being with me whilst having chemo. He took me and fetched me from every session but I think actually seeing me with all the meds, drips etc would have been difficult. Although it's a long time, there's always something going on especially with all the pre-meds etc. Anyway good luck and try not to be disheartened on about day 18ish after your first EC with the shedding. This is usually it at it's worst and it does slow down xx
Did you have recon? So I had an implant but it's a good 3 cup sizes smaller than my right breast and I had a drain. Once I got the drain removed, my left breast swelled quite a bit and looked amazing 😂 but I'd say the last week or so it has gone right down again. I feel like I have a bit of swelling on my side still though.
Oh wow! So your brows and lashes come back pretty quickly then?! That's good! I'm praying my hair is good to me! But I can only do what I can do! I learned pretty quickly that you just have to roll with the punches, everything else is out of our control so the only thing I can control is to try to remain positive!!
Oh no! Such a shame you couldn't have anyone with you! I'm assuming that's going to be the same for me then! My husband has been my little security blanket at all of my appointments and I stupidly thought he'd be allowed with me when I got my mastectomy so that was a shock when I found out he couldn't be! Better get stocking up on those word searches!!! X
It does seem to be almost the same treatment! Can I ask how your swelling is doing? I'm not sure if it's just my fat or still swelling now 5 weeks on 😅
Glad you're getting the chance to mircoblade it all helps. Mine are just about growing back to normal now just waiting for my eyelashes to catch up but after a few swear words over several weeks I'm a dab hand at false ones now. Losing my hair was also the part I was dreading most and felt sick at just the thought of it but guilty at the same time for being so vain, I just didn't want the knowing looks from people. I'm so glad I tried but realise how lucky I was with the results. Even the anaesthetist almost didn't believe that I'd already had my chemo when I had my mastectomy.
Anyway I really hope you do well with the cold cap 🙏. But I wasn't allowed anyone with me due to covid restrictions (Chemo was February - June) so you either need a good nurse that understands how important the cap is to you or make sure you tighten it yourself! xx
It was a bit hard to take. I'd known that it was highly likely I'd need radiotherapy so I'd prepared myself and was fine with that. But chemo had literally never been mentioned so I just really didn't expect it. It's no one's fault, it's just one of those things!
It's sounds like we're having the same treatment, just in a different order! I had my mastectomy 5 weeks ago too! Sorry to hear that you need further chemo!
I'm cold capping too, I'm also having my eyebrows microbladed and I've brought some stick on lashes! Losing my hair is actually probably the part that I'm dreading most so I completely understand why you cold capped.
Were you allowed anyone in with you while you were getting your treatment? Xx
Thank you for your reply.
It's nice to have a little more information on what to expect. I like to fully prepare myself!!
My husband has taken the day off of work so he's going to take me. I'm not sure what the rules are at the moment with having someone with you.
Thank you so much for all of your advice x
So sorry, this must feel like a real kick in the teeth. I had my chemo first (Exactly what you are due to have) then a single mastectomy 5 weeks ago. I had my results last Monday and along with radiotherapy, which I knew I would have, I also have to have more chemo and was gutted to say the least, so I feel for you. I cold capped throughout and lucky enough to keep 70% of my hair which I know is very vain, but it was a big thing for me.
Side effects on EC were not too bad. I had no sickness just tired and Docetaxil it was the bone ache that I struggled with but.........we are all different and hopefully you'll sail through it.
Good luck xx
My mastectomy op was last November and I had 2 enlarged lymph nodes, but otherwise a very similar story to you. I can certainly identify with the news just getting worse and worse.
I had 3 cycles of EC, then 3 cycles of Docitaxel, all 3 weeks apart. My last cycle of EC was delayed by a week because my neutrophils hadn’t recovered sufficiently. It’s quite common for that to happen, so be prepared for your dates to change. The EC drugs are injected slowly by a nurse sitting next to you, so it takes about 3 hours. Take a few snacks and drinks along, so you don’t have an empty stomach or get weak and hungry. I started to feel a bit queasy afterwards, so would recommend you arrange a lift home. The Docitaxel goes in through a drip infusion, and only takes just over an hour. You take high doses of steroid on the days before and after, so you might be feeling a bit wired, and not able to sleep much.
I found listening to music and podcasts was relaxing and passed the time when I couldn’t sleep. With the EC, I was quite nauseous and couldn’t read or look at my phone or iPad.
It’s good to keep a daily diary of how you’re feeling, so your anti-nausea medication or steroids can be adjusted for your next cycle if needed.
Just send me a message if I can help with any more information. Sending best wishes to you on your journey, Jules XX
Hi Jamie , I think they usually give you 3 sessions of one drug then 3 session of the other with a 3 week gap in between each session but everyone’s plan is individual so there may be some variation . Have you been allocated a breast care nurse , if so you can ring them to discuss this .It may help to join the August chemotherapy starters thread you will get lots of support and tips from others going through chemo at the same time .Best of luck with your chemo .Jill
Wondering if anyone can help, please? I found out last week that I'd need chemotherapy after my post surgery results showed that what we thought was a 30mm, grade one tumour with no lymph node involvement is actually a 60mm, grade two tumour with micromets in one of my removed lymph nodes.
When I spoke with my oncologist last week via phone appointment, he told me I'd be having 6 cycles, 3 weekly. When I asked him which drugs, he said he'd send me all of the info I needed.
On Saturday I received two information booklets, one for EC, the other for Docetaxel. However, it thought there'd at least be a covering letter to say how I'd be having them e.g. Do I start on EC and change to Docetaxel after a certain amount of sessions? Do I have them both at each session? I was just hoping for a little more clarity than a couple of information booklets!
I was wondering if anyone has had similar and can give me any information, please? I have my first session on 23rd August and I'm so nervous! I was diagnosed on 1st June and have had a mastectomy already, at no point was chemo ever mentioned so to get that news last week had knocked me for six! My way of feeling like I'm in control is to know exactly which path I'm taking for treatment and at the moment, I don't feel like I've got all of the information I need and it makes me uneasy!!
Any help would be appreciated xx