Good evening Black cat
I hope your chemo went well today
I have also been diagnosed with HR2 positive cancer last week. I am having a body scan tomorrow as my lump is BIG (That is me I cannot do anything half way!! ) to ensure it has not gone anywhere else although the scan showed that is has not gone to the lymph. 6 session of chemo with herceptine to try to reduce the lump then mastectomy than radiotherapy.
It is such a lot to take in. I am trying really hard to stay positive. It is going to be a long journey!
I also live on my own, my 2 daughters have decided that after chemo I will stay with them but I am not sure I want to especially if I am unwell as I do not want to be a burden.
Like you were last week I am also deep cleaning. I will also buy a travel sickness bracelet. Last week the nurse asked me re my sickness in pregnancy and as I felt quite nauseous in my pregnancy apparently I will be quite nauseous with chemo. So any advise will be welcomed.
sorry I went missing!
Well, where do I start? Had chemo Tuesday morning, managed the cold cap too, I didn’t find it as bad as expected, first 15 mins was a bit painful but it was like a challenge!!
Went home for a couple of hours then I started to feel a bit dodgy to say the least!
had the tuna 3 times then the nausea started. I had taken all that had been prescribed to me but I was wretching 2-3 times an hour until I was finally sick between 3 & 4 am.
rang the hospital and they told me to come in this morning, so that’s where I’ve been, had anti sickness IV then 2 hours of saline.
home now, better but still a bit delicate.
I felt terrible leaving the kids today too.
anyway, hopefully tomorrow will be better.
glad you are ok Blackcat
good luck for tomorrow Em39
Thanks for your message. No, I didn’t have anyone with me (everyone who could have come to the session with me is working, like I normally would be, and so I didn’t want to disrupt things more than necessary). As a nurse has to sit one-to-one with people for the EC infusions which are delivered by hand, there would have been very little space for an additional person in my treatment bay anyway (obviously your unit may be different). I did have a couple of neighbours ready to come and rescue me by car if I had felt unable to walk home, but I live very near to the hospital (about a 4 minute walk through a small park), and so walking is the quickest way to get there anyway, as I live in a historic city with horrendous traffic jams. I found that the walk cleared my head after being in the hot stuffy ward, and so I went a bit further to some local shops to stock up on different kinds of squash to dilute plain water (which during the treatment started to taste a bit unpleasant). Everyone is different, though, so I think that it will depend on how far you need to walk, and how you feel after the treatment. I know that some people feel dizzy afterwards, so it would be good to have a backup plan of someone ready to come and pick you up if need be. I was told by the nurse that if I had not felt able to walk home, she could have arranged hospital minibus transport for me, so maybe that is an option for you too.
I hope that all goes well with your treatment, and look forward to comparing experiences and tips! I have just had some dinner (some cold chicken and salad) and am feeling pretty OK so far, but am checking my temperature periodically and am aware that side effects could hit at any time.
Hi everyone just to let you know your nadir days are usually 7-14 when your immune systems will be at lowest for those having fec-t on a 21 day cycle, please check with your units everyone so you know when your most vulnerable low immune time is during your cycles, but always take your temp regularly and always check with your units about anything 👍keeping safe during chemo is very important 😘😘💕💕✨✨Shi xx
Thank you for the update.. I’m also having EC so it’s good to get some tips on how other people are finding it. I live not far from my hospital and was wandering about walking there.. I think I will now you seemed to have managed it ok. Did you have someone with you?
👭👭👭looking good August thread ❤️if you get thrush mouth make sure you get fluconzole and not fobbed off with drops 👍I know it’s a bit 😳but thrush mouth is common during chemo hence me stressing oral hygiene before 😘 right tune on the chemo jukebox is this is me from the greatest showman 💪💪💪💪help you all 🥊🥊🥊🥊 😘😘💕💕✨✨Shi xx
Hi EM39 and all on this thread,
Thanks so much for your good wishes for today. Yes, it has been really good to get the treatment started, after a few anxious weeks of waiting for tests and results. I had my first EC session this morning, and the treatment went well (it only took 2 hours and I was able to walk home afterwards and do a little shopping). So far I the only side effect I have had is a runny, itchy nose which started when the C part of the treatment went in (the nurse said it can affect your sinuses). I have come home with steroids to take for the next 3 days and anti-sickness pills, and so am just waiting to see if/when other side effects will kick in. I guess they will at some point soon, but I am grateful that things have been OK so far. I have found that I am more hungry than normal (starving, actually) which I didn’t expect to be, but I guess that it is probably from the steroids in the pre-treatment drip. I have been given a set of charts (like a spreadsheet) of boxes to fill in each day for side effects, temperature, exercise taken, food eaten, mood etc, which I think will be quite useful in tracking how things go. I was also given vouchers for free gym membership and for various complementary therapies, which was nice. The oncology nurses giving the treatment were lovely and the other people having treatment were full of jokes and useful advice, so the whole process was much less stressful than I had anticipated. We were offered tea, coffee, juice, biscuits and sandwiches throughout. At some points we were having such a good time that I forget I had a cannula and that the dreaded red E was being pumped in. I know that I have definitely had it though, as I have discovered it is quite true that it turns your urine red!
All the best to everyone on this thread preparing for, or recovering from, a treatment session. I hope that your session goes well tomorrow EM39. This time yesterday I was feeling petrified too, but today I feel much better because I know that the actual treatment process is not nearly as scary as I had imagined. Every day is another step forwards through our treatment and towards being well again - we will get there, even if it takes a while.
the community champions on here have been amazing! I scared myself silly looking on dr google when I found out it was TN. I thought well that’s it there’s nothing they can do 😳 Iv now banned myself off google. Half the information on there isn’t accurate or is out of date. My breast nurse assured me whilst it’s not your more common breast cancer it’s something the oncologist deals with day in day out. I’m getting very nervous about starting my chemo now. Having my eyebrows microbladed tomorrow and hair chop this week too in preparation 😳 xxx
Big hugs back to you Lisa - we all need them at the moment I think (and I am not a huggy person). I am TN but have had the surgery first (as they thought it was just DCIS initially) so if you need a chat about surgery (I had a WLE not a mastectomy so I can't talk about the latter) I am very happy to support you - it was really a very easy process. The TN bit is the worst but talking to the fantastic community champions on here has made it so much better - I think I might have been a nervous wreck otherwise. Keep in touch xx
Got the letter today for my appointment with oncology next week so hopefully will be starting this next bit of the journey in the next couple of weeks. We have a long weekend away next weekend for our silver wedding so it won't be before then but should be before the end of August - I hope so in a way as I want to stay in this group. Feeling nervous and a bit grumpy about it to be honest - seriously worried about my hair (don't know why as its hardly gorgeous) and if they don't let me try the cold cap I will be seriously unamused. Hopefully we can support each other through this and make it just a bit better as a result. Keep strong and well xx
You sound very organised - kondo-ing the house is a thought...... My step daughter has a business making children clothes and she has brought me some sewing to do which I am hoping I will be able to manage on my less energetic days. I have my appt next week so presume I will be starting before the end of August which I am pleased (odd thing to say I know) about so that I can get this thing done. Keep well xx
Im also having EC chemo starting in the 16th. I get what everyone’s saying about feeling totally fine other than knowing this critter is in me ( I’m having opp after chemo) so the thought I’m going to be made to feel ill is not nice at all. I think the trying to stay as active as possible is key.
Spottycotty how how are you feeling today?
I was thinking of you yesterday.
Big hugs to everyone 😘 we sure do need them. Xxx
Hi Blackcat, Best of luck for you today....will be great to get started!! I'm starting Thursday, petrified but bring it on xxx
Spottycotty - hope it's going well today!
I'm now day 6 post EC - I've had a rough few days 3-5 with feeling totally exhausted, head achey and also very grim stomach issues (of every variety...historically I have very bad IBS so I had a suspicion that this was going to be my weak point and that has proven very much true...). But today I managed to be SHOWERED BEFORE 9AM (whoop!) and whilst I haven't attempted anything ambitious beyond some pottering around and a bit of cleaning, I'm feeling more like a real human being again rather than a spacey zombie. I've forced myself out for a walk every day, but think tomorrow I might be able to do a bit of work from home if I'm feeling like this, fingers firmly crossed. My eldest has been at her gran's and my 3 year old with her childminder so far this week, but thursday and friday they're both back here (plus my mum), so I'm hoping we can manage to do something fun together before I go back to the zombie mum mode next week (my second cycle is the 16th as I'm on fortnightly).
Just hoping that I can adjust my meds a bit to get something for my heartburn which has been utterly horrendous and waking me at night, but hoping that maybe this is going to map out a bit of a pattern for my next cycle.
Have started a bit of obsessive cleaning and sorting...determined to marie kondo my house during this process! Also, MY GOODNESS, the hunger!
Feels an awful long way to go still, but happy to be feeling a little more positive today Big love to you all x
All the best with your first session - I’ll be thinking of you. I had my chemo pre-assessment today, and am feeling nervous about my first session on Wednesday, but I will be glad just to get the treatment started. Like you, I feel fine now and can’t imagine that in two days time the side effects will be kicking in, whatever they are going to be. I will keep my fingers crossed that everything goes as well as possible for you tomorrow.
I’m having EC then paclitaxel. I’m not going to lie I’m 💩 myself about it but it has to be done so not a lot of choice really 😫
Well I’ve had a red hot spicy curry with mussels 🤣
Thanks for thinking of me, I’ll keep you posted.
Really good that you’ve now got a date to focus on and try to prepare yourself then, how are you feeling about it?
Do you know what drugs you are having then??
Hi Spottycotty, I had the same chemo as you in Oct'17 and I'm also TN. One thing I found that helped with sickness was to wear travel sick bands whilst I was having chemo and for a few days afterwards. I don't know if it was definitely that which helped, but I wasn't sick at all and barely nauseous. I hope it goes well for you tomorrow x
iv just got my date for mine today. I’m starting it on the 16th. I hope your having lots of nice food and treats tonight before tomorrow! I’ll be thinking of you. Let us know how you get on
Well tomorrow is d day, can’t lie, I’m bricking it 🤣🤣🤣
just cant imagine feeling ill by this time tomorrow.
How are you feeling Blackcat??
I am also TNBC - picked up on screening at the beginning of May, followed by WLE and SNB. Apparently all contained and removed so I am hopeful that this next bit of treatment will ensure that any potential spread will be sorted. I am nervous but find the support and solidarity on this forum immensely helpful. Good luck with your treatment - I am hoping (if that is the right word) to start by the end of August. Just want to get on with it now. xx
I hope to cold cap - its worth a try and I will get a wig in case it doesn't work but I am hoping that thick, coarse hair will stand me in good stead (after all these years of cursing it)! I too, am TNBC and will be a few weeks behind you on this journey but we will all get through this.
I hate the idea of making myself ill but accept that I have to do it. xx
Nice to meet you - I’m in a very similar position to you, in that I am starting chemo (two rounds of EC, then four of Docetaxel plus Herceptin and Perjeta) next week. My first session is on Wednesday 7 August, so one day after you. I was diagnosed with HER2+ breast cancer in early June, and will be having neoadjuvant chemo (so the surgery will follow afterwards). I have decided not to opt for the cold cap, as my oncologist said that the likelihood of success with EC is low. I went for a wig fitting last week and it was not as bad I had had feared, as I managed to find a wig which is quite like my own hair.
Like you, I am feeling guilty at putting those close to me through this whole process, but it is not our fault that we have been diagnosed with this disease, and so I guess I am just trying to take each step as it comes and do the best I can to get better. At the moment I am very apprehensive about the side effects of the chemo, and I will be glad to have the first session over just to know what I am going to have to deal with.
I hope that your first session goes well on Tuesday, and look forward to hearing how you got on. Hopefully we will be able to share experiences and tips!
Please cold cap , it is no-where near as awful as it is made out to be. It was easily tolerable for me, yes at the end of each chemo you look like you've just got out of a swimming pool but it's so worth it .Those who persevere do not regret it and it's not just a few who benefit. I've just finished 3 x FEC and 12 x weekly paclitaxel over the past 5 1/2 months and cold capped throughout . I have had thinning on the crown but probably have 80% of my hair remaining and hair loss was a very big issue for me . I didn't start with thick hair.
There's a Paxman (the company that makes the machines) members' group on facebook - if you join it you will see lots of success stories and tips
Sorry that you find yourself on here along with us all. It’s all feeling very surreal for me still but just want to get the chemo started now so I feel like somethings actually happening! I’m sorry you’ll have to put up with me freaking out about every single little thing 😂 I’m hoping you ladies can keep me sane and calm. Some of the lovely ladies that have already been through all this have already been helping me so much with giving me reassurance And help.
Were all here for each other 😘
I’m 45, with 12 year old twins.
I was diagnosed with grade 3 tnbc may 19th.
had lumpectomy with clear nodes and start chemo 6th August.
I too understand the feeling of making yourself ill to get well when I’m fit and active already, very bizarre and frustrating really.
I’m having 6 rounds, 1 every 3 weeks of FEC then onto docetaxol for the last 3, then 15 radiotherapy sessions.
Im booked in for cold capping but im realistic too, I have fine hair anyway so if I lose 50% I think it will be very noticeable so I’ve ordered my wig and have various scarves on standby, I just feel Ill give it my best shot then what will be will be.
Im quite level headed and taking this all in my stride but I do feel guilty that I’m putting my family through this, does anyone else feel like this??
anyway, nice to meet you all 😀
Hi remember to book your look good feel better sessions with your local Macmillan centres, they have professionals in to show you how to do your make up to create brows and lashes etc and you also get a goody bag with about £200 of free make up in it 👍💕💕✨✨Shi xx
im also having EC.. I’m having that first then packitaxel. Glad your not feeling too bad at the moment and managed to get out yesterday for a little bit. I’m thinking I’ll be going through a few box sets over the coming months too.
Take care and big hugs
Wow, it's great to be so quick between diagnosis and starting chemo so you can get this thing started, but that's a helluva lot to get your head around in a short period. Do you know what your chemo treatment regime will be yet? Not much by the way of tips yet as I'm just on day 3 after my first cycle of EC - not feeling toooooo rough - mega nausea the evening after, but had abated by the next morning, so I managed to go for a walk in the park yesterday afternoon and eat normally. Up pretty early this morning with a pretty dicky stomach, but snuggled up on the sofa with a boxset and the cat and feeling better, and hoping I can get out and about a bit today! Sending you love and strength for the next few weeks xxx
Just jumped on here as I’m starting chemo this month possibly this Friday if not the one after. I was diagnosed with TN breast cancer on the 19th July. Totally freaked out by it all so came on here for some reassurance and Support. Iv loads of amazing people around me but I’m sure you’ll all agree no one knows what your going through unless they’ve been or are going through it themselves. Iv got 6 months of chemo ahead of me 😫 Iv had some tips Already on how to get through it but any other tips would be very gratefully received.
Hi EM39, cripes, that sounds like a lot of surgeries to get through, this is such a twisty turvy journey, as treatment always seems very different to the first appointment (I was just initially expecting lumpectomy and rads). It does feel good for getting this started, so will be thinking of you next week and then it's one ticked off. Day 2 here today and whilst I couldn't get out of bed until 11.30am, I managed a shower and a walk outside in the park for an hour, as well as chatting with the inlaws who were here looking after my youngest - who knows what the next few days will unfold but I think this being less of an unknown is helpful!
Wigs wise, I felt better after my chop as it's helped me get used to myself with less hair... I haven't looked at those shops you mentioned, but I had two arrivals from annabelle's wigs today, pretty cheap acrylics but I love them https://www.annabelleswigs.co.uk - I'll try and post a photo of them in real life on here if I can figure out how to log in from my phone... I'm awaiting an NHS wig which I'll get for free (it seems very random how different hospitals work this as I've heard other folks getting a voucher towards the cost, whereas they told me any acrylic wig would be free- I'm under the care of Guys and St Thomas, and they have a wig fitting unit there who have helped me order one and then will trim it to size) - went for a more conservative one for the school run. Also got a nice turban from Rona's turbans on etsy.
Good luck and I hope you have a lovely treat filled weekend before things start next week
I'm 39 with 2 young boys (5 & 8), diagnosed in April with 8mm IDC, Grade 3, ER+ and HER2-. I had lumpectomy and sentinel nodes were clear. Three surgeries later, they couldn't clear margins, as DCIS and a little more invasive cells were found under the microscope, so I'll definitely need a mastectomy.
Meanwhile, I have had the oncotype DX test done and this came back at 21 and since I'm under 50 that's a 6.5% chemo benefit. Had appointment yesterday with oncologist and I start on Thursday 8th Aug....ahhh everything moves so quick and super scared. I due to have 6 sessions of FEC over 18 weeks - to be reviewed after 4 sessions. Wondering why I won't be having FEC-T (oncology ward manager did question this, but seems to have confirmed I've not to have the T) Anyone else just having FEC?
I'm petrified about losing hair and just realising how much it makes me look like me. ANyway, I will try cold cap but realistic that it only works for a few people (getting hair chopped on Tuesday afternoon) and wig appointments Tuesday mrn with local shops. Looking at a few sites and wigs are so pricey....anyone heard of these ones (www.sheswigs.co.uk; www.urhair.co.uk) wigs look nice and good price too compared with some human hair wigs at ££££.
Can't wait to get started on this...so I can get it over with! Totally know what you mean with the fit and healthy, so weird that all this is going on inside and we can feel completely well. I'm getting my eyebrows microbladed tonight so hope this looks natural (fingers crossed).
So glad for this support forum...we need all the info and support we can get from each other.
👍well done Becky first on ticked off 👍👍keep the fluid flowing now. If your antisickness meds don’t work ring your unit, they will tweak them till they hit on right combination. Some ladies on my oct17 thread used the travel bands for motion sickness and found these helped 👍for those not cold capping and going for the chop, hair usually starts to fall out around day 15 onwards, please think about donating your hair to little princess trust that make wigs for children and give them to them for free 👍turn it into a positive 👍💕💕✨✨Shi xx
Another newbie here - I had my first chemo this morning so just made it to the August group Writing this slightly whoozy in my bed, as it feels like the side effects are just kicking in, currently feeling as if I have I downed an inadvisable number of gin and tonics over lunch time - head is a bit fuzzy, a little touch of nausea and everything is a wee bit slow and befuddled.
I was diagnosed in April with hormone positive lobular cancer, had a mastectomy and immediate implant reconstruction in May, and they found macromets in a node, so this was followed by full node clearance at the end of June. Luckily other nodes were clear - I was borderline for chemo and they had discussed the Optima trial (the tumour would be sent for the Prosigna test to determine likely benefit of chemo) with me before realising I was too young (to go on the trial you need to be over 40 and I'm 36), so after getting my CT scan results this Tuesday (full body scan was clear) it was full steam ahead today! I'm on accelerated EC, so 4 fortnightly doses, and then 12 weekly paclitaxel, so feels a long old slog ahead, but I'm pleased to be onto this phase and cracking on with it now, and hoping I get through without too many delays so I'm done for Christmas.
All feels a real unknown about how my body will cope at the moment - cancer aside (ha!) I'm fit and well, and I've gotta say it feels very alien to be subjecting my body to something that will make it feel ill, as aside from the obvious physical after affects of surgery and being pretty generally anxious, I've been quite 'well' through this process so far. I have two young daughters (3 and 6) so home life is hectic. Work wise, I'm a self-employed storyteller and musician running workshops and groups for families, so I've had to take a few months off already and dep out my work (I've done odd sessions when I can). I'm working on some recording and digital content whilst I'm off regular work, but I'm hoping on better days I might be able to do some sessions, but just trying to take it day by day. Finances aside, it's so frustrating to be forced away from the job I love and business I've built up, but I think I will approach things differently (in a positive way!) when I go back rather than rushing back at full pelt.
Oh, and I went for the big hair chop yesterday and am not cold capping (my raggedy mum hair wasn't really my crowning glory, and I figured I'd get very frustrated not being able to style, and a wee bit obsessive about watching for shedding, so going to embrace the wigs, scarves and bald look for a while) so will be watching my head with interest and go for the full shave. Quite enjoying my funky short 'do in the interim though!
Sorry, this was a mega post Look forward to meet you all on here, good luck and love to everyone
Hi wolves girl ❤️Glad you’ve found the thread ok 👍just need lisaloo79 to climb on board the chemo cruise ship 🚢 as you all set sail in August ❤️❤️ Take notes at your meeting and have questions ready at each appointment. Take your temperatures regularly during chemo and drink at least 8 glasses of water a day too 👍 If your antisickness meds don’t work ring your units you should get a rapid response card so you are seen within an hour during chemo 👍 always ring your units for anything during chemo, they want to keep you safe 👍if your pee burns but no temperature ring them, it’ll be a uti and will need treating ASAP. See your dentists before starting, oral hygiene is very important during chemo. You get lots of ❤️👭on here 💕💕✨✨Shi xx
I have joined this thread as I might be starting chemo in late August or early September. I was recalled from screening at the beginning of May. To all intents it was DCIS but on histology showed a small (11mm) Grade 3 in the middle of it. I found out today that nodes were clear so am hopeful that it has all been removed. Sadly it is TNBC so only chemo and radiotherapy as treatment options but I remain positive that this will work given that it seems to have been caught early. It has been a long three months but the care I have had is excellent. Just need to get on with this now and get this thing sorted. Hope that we will be able to support each other through this challenging time. xx
I’m new here too - I was diagnosed with HER2+ breast cancer three weeks ago, and will be having neo-adjuvant chemotherapy (two cycles of EC then four of docetaxel plus Herceptin and Perjeta, I think) before surgery. I just received the date for my first chemo session today, and it will be a week today (Wed 7 August, with the pre-assessment on Mon 5 August). I am glad finally to have a date for treatment to start after days of waiting for scans/tests and results, but I am terrified at the same time! I am trying to be prepared (deep cleaning the house, freezing some home-made soups, and buying an ear thermometer plus lots of supplies to help with side effects as suggested on the forum threads), but it is all so unknown and I feel out of my depth. My job is in the health sector and involves lots of public contact, long-distance travel and working with patients in GP clinics/hospitals, so my oncologist has said I cannot work at all during treatment due to the danger of infection. This is getting me down, as I know that I will really miss my work and the feeling of being useful. I also live on my own (although luckily only 4 minutes walk from the hospital where I will have treatment), so I am worried about how I will cope with the side effects if they are really bad. I do have good help from friends and neighbours, but they all work so are not available all the time.
It would be great to link up with others who are also about to start chemo, and hopefully we can support each other and share experiences as we go through the next few weeks! I know it will be challenging, but I am sure we can do it!
Hi New here not sure how it works...I had my mastectomy in June and lymph node surgery July I was offered chemo and due to start.. in few weeks...which I’m unsure of as I was told it was my decision to take treatment
Thank you for getting in touch. I am sorry you've not yet had a response to your comment. I'm sure someone will be along shortly to continue the conversation.
Social Media Officer
This thread is for anyone due to start chemotherapy in August 2019. Others will be here soon but please come on here and 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.
Here is the BCC guide on chemo:
I finished my chemo over a year ago 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: http://lifeafterlola.com/
Best wishes xx