Hi ladies, we've gone a bit quiet, hope you are all OK.
Sorry to hear about your BRCA diagnosis Lisajayne. All you can do is take it one step at a time but they will sort you out I'm sure.
Lou, I've not seen that book, might have to look it up for company in the dark days, thank you.
Juzcooper, good news on your lump shrinkage, hope that keeps up, good riddance to the lump!
Went to see oncologist the other day and mentioned the healthy appetite, he said it's a steroid in one of the anti sickness pills and he will tone it down for round two, otherwise I might be found on the kitchen floor, emptying the fridge contents down my neck!
Hair falling out by the handful at 14 days post chemo, I haven't cut it and am not going to. Got wig at the ready and will just use a wig cap when it thins so much you can see. Surprised at how much I've lost and it's not noticeable yet.
I'm gearing up for round 2 on Thursday, have almost finished Christmas present shopping and most of the wrapping, just cards to think about. It's nice to have Christmas to get excited about actually, it's taking my mind off things.
I react badly to normal dressings so I have a prescription for anti allergenic ones which I used to take with me, although they were available at the hospital if I forgot. You need to make sure it's in your notes and mention it each time.
Wouldn't it have been easier to have a port fitted or are you too late now?
Had my results back from genetics yesterday and I have the mutated BRCA2 gene! Didn't think for one minute it would come back positive 🙈 So, once all this chemo is out of the way I'll be looking at ovaries and boobies surgery, probably just have the whole lot removed - in for a penny and all that 😬
Braved the shave on Monday. I honestly thought everyone was exaggerating about the quantity of hair loss - they were not!!! Since I stopped the cold cap it shed like an animal, I would never have believed how much if I hadn't experienced it!
I've got a crimbo dinner with my wonderful work family tonight so will be nice to slap on a bit of make-up and wear my new wig that they all clubbed together and brought for me. They have been amazing and I feel truly blessed to have their support. I will raise a glass to you all 💗
I hope you are all doing well and are looking after yourselves.
Glad you're feeling better Kateday, we are all entitled to have a melt down, we just have to keep thinking, this will pass.
Had my picc line flushed again today, when the nurse took the little white strips of the line, my skin had blisters where the adhesive on the strip had been. I had felt some itching this past couple of days, but did'nt realize it was caused by the strips, they had sorted the dressing out so my skin did not react so much, but the nurse said it looks like I may have to wear an ordinary bandage to cover the picc line.
Has anyone else had skin reactions to the dressings?
You're right about being ravenous. Think my family were quite shocked at how hungry I was last week. I did overdo it one day, ate too much for tea then did the injection soon after - big mistake! Made a note not to do them on a full stomach ever again.
I'm hoping I feel well enough to go to my little boy's Christmas concert the week after next. Am determined to go, will just need to avoid all the coughing parents. Seem to be lots of colds and coughs going round now.
I'll probably go for the wig that best matches my hair too, though my mum really liked me in a lighter shade, said it made me look younger!
Have you read 'Tea&Chemo'? It's well worth a read if you haven't. A friend bought it for me and it really helped when I was losing my positivity last week.
Take care. xxx
Hi Lou, thank you so much for the welcome! Yes, oddly I'm really looking forward to Christmas here (despite the chemo), today I treated myself and hubby to a big Quality Street advent calendar! Also in overdrive now I feel up to things, although I have had a few dizzy spells when I've been rushing around.
I did find that although I haven't felt sick, I have been ravenous at times, and my stomach feels like it is rumbling from lack of food. I'm belching a lot too, not a great thing.
I have my wig, picked it up this week, an exact colour match to my hair and a slightly shorter style, really happy with it. I didn't have too much choice as the wig lady asked me what I wanted and brought a small selection in, THE one was in that first batch of wigs, thankfully.
Will be thinking about you next week, as we gear up for round 2.
Welcome Holeinone! I too, like you didn't post for a little while but found the posts from everyone so helpful and comforting especially in week 1 after chemo when my chemo brain kicked in and I felt too spaced to type much that made sense.
I'm just a day after you for my EC so my next is 7th Dec. Will be thinking of you on the 6th. I'm having my PICC line fitted that day.
My hair hasn't budged yet but have decided to cut it short next week anyway and get the wig (so hard to choose, had no idea there would be so much choice of style, colour etc.)
I'm hoping like you that the anti-sickness drug mix works well next time too. Trying to get some Christmas shopping done and going into cleaning overdrive before end of next week. The kids are already pestering about getting a tree. Will be something nice to look forward to after chemo 2.
Hello lovely ladies, this is my first post but I feel as if I know you all as I've been lurking for absolute ages, gleaning info and comfort from your posts, so thank you for that.
I've already had a WLE and started chemo (3 FEC and then 3T) on 15th November. Had a week of absolutely horrific (to me) night sweats and feeling spaced out, unable to sleep etc, which I can see appears to be a pattern. I'm very thankful the anti sickness goody bag I was given worked like a charm and although in week two post chemo I've had a couple of watery mouth moments, I've not actually been sick. I can concur with the taste changes, my usual cup of tea was vile and I had to resort to tropical cordial and chicory coffee instead.
Not looking forward to doing it all again on 6th December, especially as I expect I will be bald by then. Tried the cold cap but it was too tight and the cold on my forehead brought on a migraine so it was whipped off pretty sharpish!
Hi Clarabella, I am like you having 3 EC and 3 Doxatel although my second EC has been deferred to Friday because I had an abcess. I cold capped on my first session but won't be doing it on my second because I didn't like it and my hair is shedding like mad, OH says he doesn't know who is worse me or the cat! Went for my wig yesterday just in case because I already have a couple of bald spots but they can be covered by the rest of my hair.Will have to see how it goes. Hope all those who have done round 2 will start to feel better sooner. Went to my stepsons and daughter-in-laws on Sunday for a roast dinner, had a really good time doing something normal. The two grandsons who are 9 and 5 helped to cheer me up.
Feeling better this evening, the second session went much the same as the first, seem to tolerate the chemo and nausea ok but it's when I start the injections 2 days later that's when I start to feel really rough !! 😟
I too have a similar treatment plan to you, 3 EC + 3 Docetaxel although I also have herceptin from cycle 4 as HER2+. I'm 5 days post cycle 2 and also using the cold cap, it seems everyone's experience of it appears to be different ! ....I've lost quite a lot of hair on my head but strangely not from anywhere else😮....Have decided to have it cut short tomorrow and see how it goes before starting cycle 3 in a couple of weeks.
take care everyone x
First time poster. A bit of background, I was diagnosed with BC in October and had my first chemo (EC) on 15 November (EC). My plan is 3 * EC and 3*Docetaxel.
I had a port fitted before my chemo as my veins are shockingly hard to find. It took several goes to find a vein to put the canula in to do bloods for the first time, and that was with someone holding my arm so tight I got pins and needles in my hand. So the port was a no-brainer for me. Although I have to say it feels very weird still.
I've been interested to read all you hair stories (espeically the lady garden ones). I used the cold cap and didn't find it that cold at all, which I find slightly concerning. To date I've not had anything above my usual hair shred, although I've been freaking out a little everytime I've found a single hair on my brush.
My head has been itchy since the chemo and today it feels a little "burny" in places. Can't really describe the sensation. I'm guessing this is the start of the big shred.
Interestingly the hair on my face is still growing (monobrow and moustache) albeit slower. I was really hoping that one benefit (sunny side up?) of the chemo would be not having to keep attending to the mono!
Other than that I've not had too many side effects this time, was very tired and hungry for the first 3 or 4 days but seem to pick up after that. Lots of headaches though but nothing the odd paracetamol has helped with. The racing heart freaked me out though, a quick check with my nurse and its a side effect of the steriods. Am trying to drink lots of water (have gone off tea completely) and am trying to get out and do some exercise every day.
Next round is booked in for 6 December can't believe how fast it is coming round.
Hope you're all doing ok today. Emily, hugs to you especially and hope things have picked up for you and you're getting more support. My Macmillan nurse has been brilliant so hope you can similar support through yours. Hang in on there, as I'm finding week 2 so different and fingers crossed you will too. The lethargy has lifted and I feel almost normal, but realise with each chemo cycle it will be tougher. Just need to take one day at a time ... This group is brilliant for support. I didn't feel well enough to post at first but just reading the posts lifts your spirits. Liloc, so glad your oncologist has helped adjust your meds. Mine has also said not to hesitate if the cocktail isn't working then they can adjust. Fortunately mine seemed to work quite well last week to keep the nausea at bay.
I enjoyed trying on the different wigs yesterday but decided as my hair is holding on for now, I'll go shorter next week and make a final decision on the wig then.
My mum makes a mean cheese scone so I have a freezer full, funny how we're all craving similar things. Take care all. xxx
Hello again ladies
It's now day 13 since I had my second cycle of EC and I feel just like my old self again, although I get a bit tired in the afternoon. I do find going for a short walk helps, someone in one of the threads said, she had found it helped with chemo fatigue and having read up a bit more about this, I have to agree, even when I was feeling like rubbish up to day 9, I went for a very short walk with hubby, it also seems to help with the nausia. I'm grateful to say I've only gagged a few times, but the anti sickness tablets have been a blessing.
Katday, I know how you feel about giving up and I felt exactly the same and told my husband, I just can't face 9 months of this. My husband said "you've never given up on anything in the 44 years we've been married and I'm not about to let you give up now, I want us to grow old together".
Yes we feel like trash, tired, sick, aching and crying all the time and besides that, we have to face the injections in the stomach, just to start our white cells off again, so they can knock us back down. But when we feel better, we can feel more logical about it and realize what the alternative would be. Everyone should try to put up a fight and if that means having to deal with side affects for some months, we've just got to do it.
Last week I looked and felt like someone had white washed me, dragged me through a battle field and left me in the hedge. Today I got up early, sorted out the washing and ironing and I've been out shopping. A week on Wednesday I will have EC cycle 3 and feel like death again, but I will hold on to the fact that it will pass, maybe not for eight or ten days, but I will feel better, we just have to hold on and wait.
Even though I feel rough, I've taken up doing jigsaws, it really does help as a distraction, the brain consentrates on finding the pieces rather than how I feel, I can actually loose myself just for a short time, I also find it seems to help with the feeling sick all the time.
Hello November Chemo Ladies... just wanted to pop in from the June chemo thread to say hi and wish you all well. You all sound like you bearing up and finding comfort from each other. Its a difficult path to tread and just reading your posts brings it all back to me, the hair loss, wondering what SEs you will be getting.. its so scary and eveyone reacts differently. I had a masectomy in May then 3 x FEC and 3 X T (finished on 23 Sept) then had ANC and now about to start 15 x Radiotherapy on Thursday. Its a long haul but you just have to tick off each cycle as they come and you'll soon get through it. On a hair perspective, I lost mine by day 12 of the first cycle but by the 2nd of the T part it was growing back and now I have a full coverage of white (eek) hair, getting thicker and actually sticking up in the morning. Keep chatting to each other and ringing nurses and hotlines whenever you need... take care all..
In bed currently on day 4 after round two. Going to try to get up today, at least to the sofa! I’ve not had a great few days, but was “only” sick twice, although still very nauseous, whereas after round 1 I had spent the whole first night being sick. That said, I think I feel more “under the weather” than I did after round 1.
I have to admit that I’ve had passing thoughts on giving up chemo too. I keep trying to remind myself that it’ll be short term - it’s hard to deal with these months of feeling rubbish, but it’s for the best long term effect of getting rid of all the cancer cells. I’ve had surgery already but definitely want to squash anything that might still floating around in there!
Best wishes to all of you, and just remember that we are all going through this together xx
Anitmth, you’ve got me craving cheese scones now 😂 Last round for me I was craving anything with cooked tomatoes and/or mince 🤷♀️
It makes me feel better this morning to know I am not the only one doing this. Day 5 after round two of chemo here, and feeling worse than round one, but still going.Sore everywhere, boob, armpit, back and neck, hips, upset tummy, the list goes on.Drinking lots and eating weird stuff ( currently have a thing for cheese scones with butter - why?!).Hair pretty sparse and I am getting used to going out in a hat.I can't quite do the wig yet, and it has a really long fringe so I just look like The Adams Family Thing- it needs a trim! Anyway, keep sharing, keep going, and we will all get through it .Big hugs to all of you, especially those of you without friends or family nearby to help. xx
Giving up the chemo isn't an option, you and all of us on here have got this in the bag. Yes, it's harder for some than others and we've all got different support networks, but don't forget you. Do this for you. Sorry if that sounds harsh, but we all need to fight this together 👭
My BCN is nice enough, she rings with results which is handy but always at a time she can't talk properly as she'll be in clinic! She does ring me back though if I leave a message. To be honest I get better info on here!I
Thanks for the tip 're the green veg. I'll give that ago
Take care and keep fighting
You definitely need to pull on the support resources available to you, you are not alone, and use this forum to chat, moan, whatever! If you find you are struggling mentally, please also speak to your GP, do not suffer I silence 💗
Why do you think you have the BRCA2 gene, have you been tested? I'm triple negative, grade 3 with a bit of family history so was tested 5 weeks ago and get the results on Wednesday.
I personally can't comment on the EC treatment as have that still to come (I'm doing a trial) but there are plenty on here who can. From what I've read people seem to feel a bit more "normal" after the first week so hopefully you will start to feel better soon.
Please, please, please talk to someone an get some help.
Sending lots of hugs
Ditto your comments 're the treatment, feeling pretty much ok most days and forgetting we're poorly! I think I'm going to have to bite the bullet tomorrow with the hair, I thought people were exaggerating about how much was everywhere in the house. I blow dryed it yesterday and I looked like I was wearing a mohair jumper 🙈
Amazing news about the shrinkage. I had the exact same thought about the EC 's, didn't think we'd skip that one, sounds horrendous compared to our current regime 😬
I thought I'd be a bit rubbish tonight after the first injection, but ok (apart from still awake, which I think is the steriods?) But ok after the carb & Pac in general. You might find it better this time around. Drink loads of water it seems to help 👍
Take care and keep me posted Lisa xxx
Well I'm finally feeling well enough to post on the forum. Today is day 12 after my 2nd c, I never imagined it would hit me so hard, I really did get away with it lightly on the 1st c, had the chemo on the Wed and by the Saturday I felt more like my old self, this time, it felt like I'd been hit by a sledge hammer. To make matters worse my emotions have been a roller coaster ride and ladies, I'm a bit of a control freak regarding my emotions, I only ever cry at Lassie films, so don't watch them.
I wonder if anyone else has allowed irrational emotions to influence thier decision about having further chemo treatment. I won't bore you with all the details, but restrictions of not being able to dance and other things, seem to be taunting me to throw in the towel. Today of course I'm back on the level, thank goodness, and realise how irrational my thoughts were. It did'nt help I just kept crying all the time, every day all day, for no reason.
I've only ever had flu once, I was so ill and the chemo made me feel like I had flu, all day every day. I was only able to eat dry cream crackers and rice biscuets for seven days, started eating soup on day eight and by day 10, I was back to normal.
Now my brain has gone into overdrive and I'm going mad blanching veg for the freezer and other mad hatter things, almost trying to make up for lost time.
I've got to say, the nurses at the chemo unit are wonderful, so careing and kind, even my community nurse who gives me my injections is a wonder and spares time to help with questions and always gives me a big hug and says how well I'm doing. I've not seen or heard anything from my bcn since just after my op, when she mis diagnosed me as not having an infection in my wound and it was infected.
Does anyone else get support from there bcn?
I love reading how a lot of ladies on here are getting support from their families and friends, it gives me a feel good factor for them, but feel sad for those that are on their own, I just want to rap my arms around you.
If anyone had said a year ago I would be going through this, I would have thought, no I've got too many things I want to do next year, I won't have time to get cancer. But what it has revealed is the truth about those who said they cared about me and the surprise of those who hardly know me but have stepped forward to offer support, even complete strangers.
When I think about giving up chemo, I read about those of you who have young children and how you are working through this and think, if these mums can do it, then so can I.
I so admire you all and even though our daughter has turned her back on us, my freind said, what about all the hedgehogs you look after, they need you, you can't give up on them.
My doctor told me to eat loads of green veg, it helps raise the white count, when I've finished all this next year, I'm going to look like a cabbage, spring green or kale, but it does work and so far both times, by count has been high, but I do draw the line at brussel sprouts.
Has anyone on here, who does sewing, carried on, I want to get my machine out and make some tunics, but the nurse at the unit said she has concerns about injury with needles etc to my hands and can you give any advise?
I am so glad I have you all to talk too, on the days when I feel I'm totally alone, I read your posts and feel just a little bit better.
I'm on day 5 of chemo for grade 3 breast cancer, which has spread to the lymph nodes. Undergoing EC chemo x 4, then further chemo, surgery and radiotherapy. It looks likely I have the mutation in the BRCA 2 gene. I'm 33 and do not have anyone looking after me properly, I have a sister who lives in a different city, and I have friends and a flatmate but can't fully rely on any of them, am feeling very alone and scared. I work full time but can;t get out of bed currenty due to nausea and tiredness and dizziness. Can't think straight and I can't understand what's happening to me. It feels like everyone's been sugar coating the whole future for me, telling me,'the chemo won;t be that bad', or, you should be able to keep your job up etc... right now it's taking all my effort to lift my arms to type this and I have months of this ahead of me. I am stuggling to see how I can get through this. I've called the acute oncology number to tell them I am still feeling sick and tired and they suggested I wait it out a few more days, but I'm sinking into a hole and I don't want to loose my mind....
Hi Sals, that's really helpful and glad you've felt more normal. Sorry the implant is giving you grief though, hope it eases. I've been for coffee with a friend this morning and bumped into quite a few people I knew so feel better for getting out and about again.
funny I actually am looking forward to going to try the wigs next week now. Am getting fed up with my messy bob as not washing it as much to avoid more hair loss and I like to wash every day normally. I'll see how I feel about going for the short crop next week, but have parents evening next Thursday and might hold off until after that as I'd quite like to go without bumping into parents and shocking them with my new look.
Sorry the cold cap made the chemo feel so miserable. Well done for getting so far with it and I know it must have been hard to decide not to persevere. xxx
Hows everyone doing this fine Saturday? I started c2 yesterday and decided to stop cold capping. Was a hard decision to make as although my hair has come out loads, I have so much of it you would never know! I probably should have persevered with it but the thought of doing another 9 weekly sessions then 3, 3 weekly sessions was just too much for me. It's not the cold, it 's how heavy it was and how miserable and disorientated it made me, the whole chemo session was 100% better without it. I have brought my wig a long GHD styled layered look in toffee peacan, makes me look loads younger so massive bonus 😆 Just need to see how hair loss goes now before braving the shave 🙈 Have crimbo dinner with the work crew on Thursday so might need to be sooner rather than later or I'll be eating chicken liver pate with a portion of hair on the side!😂
Juzcooper1971, oncology appointment was promising, we have some shrinkage so good start. After the carboplatin and paclitaxol yesterday, feel totally fine, no nausea so far which is good. Will be those pesky injections starting tomorrow that bugger me up 😡
Take care everyone Lisa xxx
That sounds like a lovely treat. I was thinking about having a massage next week too as a friend treated me to a salon voucher. Lunch and popping to Maggies centre sounds perfect, I've heard really good things about the centres not been to my one yet but will definitely get there soon. Take care everyone. xxx
Thanks Kate, yes was told day 17 by my nurse so want to get it shorter before then ideally to avoid mass clumps of hair. The salon where I'm going for the wig fitting says they can do it for me so I'll see how I feel Tuesday as to how short I go. My main concern is how my little boy will react to me so we've read the story 'Mummy's Lump' together today and he had a laugh with my daughter's Lego friends taking their hair off to see what they looked like bald and putting different hair styles on them. I think if I make it light hearted for me and him it'll be easier. I have ordered a headscarf too but think like you say the winter hats will be a better option with the weather to come. x
Had a lovely treat yesterday. The local hospice offers complementary therapy at my local treatment, so had a neck, shoulder and back massage.It was absolute bliss, feltso relaxed afterwards. Had originally booked for the day before my 2nd cycle but that was cancelled until next week. Although I wore the cold cap my hair is shedding so might see how it goes after the next cycle as to whether I continue with the cold cap. Got my wig voucher and a fitting booked at Christies on Tuesday.My friend is taking me so we are going to make a day of it, going for lunch and might pop in to the Maggies Centre at Christies. Hope all of you who have had your 2nd cycle are not suffering too much.
Hi ladies, hope you're doing ok? I've made it to the 7 day marker since my first chemo this time last week so I'm a bit behind some of you. I'm pleased I've made it through the first week though and doing ok. I had my best day yesterday where I seemed to have lots of energy (fortunate really as my daughter was off school). I had been going stir crazy after feeling exhausted the previous 2 days so even a short walk lifted my spirits.
Unfortunately I had a bit of a wobbly start and on Monday had to go on to the day unit to be checked over (including a chest xray) as I was recording high temperatures so they have put me on a general antibiotic. I agree it's a good idea to have an overnight bag packed as I hadn't done this so when they told me to bring one I had to pull everything together just before we left. Fortunately it wasn't needed!
Temperatures now normal (I'm still wondering if I had a dodgy thermometer so have a new one now!!!) I've not enjoyed the injections much but found a coping strategy doing them before bed, taking paracetomol before and a hot water bottle as I had bad aches after the one on Tues.
So now I've taken the next step of booking my appointment at the local wig shop and will go with my mum next week. It's been in business since the 1960s so have been joking with friends that I may end up with a beehive! I still have my hair in a bob so going to decide next week about cutting it really short. It's really good to hear all your tips and how you've been coping with the hair loss aspect as think this will be really hard.
Take care over the weekend. xxx