@alig1961 Wow … your wig is amazing!!! You look fab … get out and rock that look !!! I have some 2nd hand wigs as I was getting quotes for up to £400 for wigs I didn’t feel that comfortable in. Cancer Hair Care have now opened their wig bank and if you send them a picture they email you a list of possibilities - all free. I have a straight blond bob, brown wavy hippy type hair and a pink wig for fun. Will send photos soon.
@elizab1 unfortunately we do get mixed messages sometimes. I think you need to pick the breast care nurse that you click with the most or the one that ‘gets you’ and listen to them!! I was worried about going out to my friends 50th last night (busy restaurant in Brighton on a Friday night!) and was told to not worry too much about infections, just be sensible… if you can sit near an open window or outside, great but if not ENJOY as much as you can when you can ! I’ve been told to rest on the bad days but on the good ones get out and enjoy life - sounds like sensible advice to me
I know quite a few of our group started yesterday - let us know how you got on.
@jane13 I don’t think you can start a sub post. Maybe write a post with capital headlines … I’m sure we’ll all read it.
Hi all, just wanted to let you know how my first chemo session went. I’ve read on here a lot that the reality is not as bad as your brain imagines it to be. A lot of the scary stuff is due to our imaginations putting together the bad scenarios. This is certainly what I found - nowhere near as scary as I imagined. I’ve got HER2+ breast cancer so I’m being treated with docetaxel and Pertuzumab/ trastuzumab for 4 cycles then another drug combination for the other 4 cycles followed by surgery. Day 3 after first treatment now and minor side effect of tiredness and lethargy. I know other side effects will come but this is perfectly manageable. My sore PICC line is the biggest pain but I know that will settle down in a few days. A piece of advice I was given which I’ve done is drink loads, on the day and afterwards. Also you can feel very alone but treatment days allow you to meet people face to face going through the same thing as you and of course this forum is great!! I’m on the wig shopping train as well now so all the advice on here about that is great!! Onwards and upwards ladies and even in the darkest times that we all get, remember “this too shall pass”. Xx
I can also recommend this book, the two authors are a breast cancer surgeon who herself had breast cancer and a gp who also had it, I found it very helpful. Liz also does a lot of informative instagram posts. Xx
Thanks @jane13 so glad your first round went well. I’m now feeling completely and utterly normal so week 2 has been brilliant. It’s going to be hard to go in on Tuesday for round 2 I must admit!! But we have got this… all of us. Keep going everyone - happy weekends xx
Hello
I’m 42, diagnosed with DCIS in Feb, each time I went back for results it got a little worse and after 10cm of right breast removed histology tells us there are involved margins and they found 3mm of grade 2 HER2+ Invasive too. Sentinel lymph nodes biopsy clear thankfully . I started on 12x weekly paclitaxel on the 3rd, herceptin monthly and mastectomy to get rid of whatever was left behind at some time in the future. I have a 2 year old girl and a very supportive husband who is fortunately a very hands on Dad. She’s great at keeping me occupied but the thought of potentially not being around for her is incredibly sad and obviously my head goes there…I’m scalp cooling but this week I’ve noticed my scalp is sore and feels like it’s covered in pimples so I suspect it isn’t working , would be interested to hear if anyone else had that and the outcome? Will persevere though so it was good to read the tip about paracetamol, I’ll try that on Monday. I found a thin bit of gauze on my forehead (high hairline) under the “brain” cap really helps take the edge off . Haven’t felt too bad really, just blazing hot face on day 2 from the steroids and some really achy legs, particularly if I’ve sat down for a long time so if anyone finds a fix for that one please let me know. Thank you all for posting your stories, it does help to know there are people out there going through the same. Take care all, chemo isn’t fun but we’ll get through it, one cycle at a time x
Hi all, I’m another newbie here-starting my chemo on 26/06 having been diagnosed with lobular BC that has spread to the nodes (ER+ PR+ HER2-) at the end of May. I’m 42, with a (nearly) 3 year old. It all feels like a total rollercoaster and I’m feeling scared ahead of treatment starting.
I’ve had a port fitted and my chemo plan is neo-adjuvant. It starts with 4 x EC, every fortnight, and then moving on to weekly Paclitaxel for 12 weeks. Sounds similar to you @akioqey
I’m going to try the cold cap, hoping that if it works then it will protect my son from knowing too much about what I’m going through.
A friend of mine went through this a few years ago and told me what a useful forum this was for helping her, so I look forward to getting through this with you all.
If anyone has top tips on what to take to my first chemo session/what to wear etc I’d really appreciate it.x
@ljlj Hello, my first chemo they couldn’t find a cooperative vein so it ran long and I spent a long time in the cold cap. I got very cold despite wearing warm socks and having a woolly hoody and a blanket so I’d advise taking all of those. I take my kindle to read as I find its the best distraction from the initial cold cap brain freeze. I’ve also downloaded some netflix episodes to watch and I took a magazine last time but something in the combination of steroids, antihistamine and paclitaxel they gave me made me a total space cadet so didn’t do much of any of it. I think a few other people have mentioned the first one was quite emotional, I think that makes it extra tiring. The second wasn’t as bad. Hang in there
@kaydee82 and @ljlj welcome … another couple of young ones!!! It’s rubbish all this but thankfully treatment is amazing nowadays so we’re all going to be fabulous again at the end of the year!!! We just need to get through these next few months together…
I had restless legs @kaydee82 I just couldn’t get comfortable for the first few days which was frustrating as wanted to lie on the sofa watching Netflix but I had to keep moving around! I it seems the steroids are to blame. The pharmacist and onc were going to chat about it to see if they could adjust the meds so I’ll let you know.
No real advice except take the medication they tell you to take for the first few days regardless of how you feel - you need to keep on top of the main side effects at the beginning. Then tell yourself that whatever you’re feeling, it will pass, either on this cycle or just at the end of treatment.
Hi @elizab1, I’m having the same chemo as you. (Every 3 weeks). Had my first session Friday. Felt a bit out of sorts yesterday but not too bad. Was really tired by the evening though. Had a better night’s sleep last night and feel a bit better today so far. I’ve been told ok to go into work if up to it and not to shut yourself away. Just being sensible about it. We have a group WhatsApp so I’ll just check in that no-one’s ill in the office if I feel up to going in. Luckily I can wfh too. I would recommend speaking to the BCN nurses. I’ve found them helpful when I’ve needed advice or been a bit confused by stuff.
Re those cold capping. I cold capped Friday. After the initial first 5/10 minutes of feeling like I was going to get a headache it settled down. I just had a shawl thing round my shoulders and this kept me warm enough. The room I was in wasn’t cold anyway. So going to stick with it and see what happens.
I’m 42 but with no children, have friends and family supporting me, it is definitely overwhelming and so much information being given all at once…
I had my picc line fitted on the 13th and also wig consultation the same day. While I was at the hospital I dropped in to Macmillan and they also have picc line covers, so I bought a few for good measure.
I started my chemotherapy on the 14th, was in for maybe 6/7hrs. I did have the cold cap and the nurse said if you can get through the first 15mins, you’ll be fine. She also said about having paracetamol before you have it and they will give you some during as well if needed.
I did have my hair cut to shoulder length because I didn’t want to find clumps of hair around the house, so I am prepared… Just in case.
When I left the unit I was given medication to take home, needles (not a fan) but have overcome that fear this morning and injected myself!
I have another 17 weeks of chemo appointments it seems as I also left with a schedule, every Friday for me. And then after that it changes but can’t remember what to, I’ll cross that bridge when I get there.
I know the end result is surgery followed by another round of chemo, but that will probably change…
Staying positive and upbeat and am here with you all, when I remember to drop by
Hi Everyone, first time posting here and feel moved to in case how I have felt over the last few days helps anyone else. I am in awe of how strong and positive everyone here is, and I had hoped to be the same myself but has not panned out as I expected - I guess thats cancer for you!
I got diagnosed from a routine mammogram in mid-April, was told that I would be unlucky to need chemo after an op. Op was successful (6 weeks ago now) but had travelled to lymph node and so now am on x 4 EC followed by x 4 Plaxitol, all every 2 weeks. I had my first treatment last Monday. I tried to have no expectations, but I did have and thought my usual active lifestyle and positivity would get me through.
I have lurched from nausea, aches, headaches, sleeplessness, brain fog, zero energy, flushes and sweats since then. I thought I was turning a little corner Thursday, but yesterday, wham back down to where I started - and emotionally have found this very tough. I have felt so spacey and out of it the whole time - like a zombie.
This is a big lesson in that no one way works for us all, and it really is one day at a time…as everyone is saying, we can get through it. Sorry if this is a bit doom, but I wanted others to know that it is also ok to not feel positive and actually not be coping with daily activities… but also know that i know that I can get through it…
@nicd … of course we can’t be positive all the time. I find it quite therapeutic being positive on here but honestly, some days are hard. I went to watch my son’s athletics competition today and although physically fine, it was exhausting being upbeat all day + I’ve just got in and burst into tears because everyone else was going home to a lovely Sunday dinner and a normal life whilst I have fkg cancer and have to have chemo this week. I feel bitter and jealous and not positive at all !!! I’m rolling with it but thanks for reminding us that there are good and bad days and that’s ok. xx
Ah thanks @wjs . Glad to hear the first session was ok and you’re starting to feel better. I’m going to try the cold cap too so it’s good to hear it wasn’t completely unbearable!
@nicd you’re right, it’s important to acknowledge the grim bits too. I got sucked into a doom spiral last night after a bit more exploration of this site, didn’t get a lot of sleep after that. It happens though. Keep telling myself this is the temporary sh1t we have to get through to get back to normal but there’s no denying it is sh1t. Still worth doing though. I’m back at the day unit for more fun tomorrow, hoping my shiny new port lives up to its potential and makes the literal pain in the neck worthwhile. @donna_51 very much appreciating your honesty and positivity, hope you got some good dog walks in over the weekend, I bet all those other parents are knackered too, and half of them will have flat Yorkshire puds
Hi everyone!
Newbie so here goes the introduction… I’m Katy, 37yrs old diagnosed with non invasive localised breast ca on 29th May. All scans show everywhere else including lymph are clear so pleased with that. We are HER2 +ve as well so another ‘good’ thing.
I live in Mallorca so I thought maybe the treatments would be slightly different however it seems that it’s very similar after reading everyone’s stories!
The lump is over 2cm but under 5cm so we are doing x4 AC (doxorubicin and cyclophosphamide) then will move to x12 paclitaxel with three weekly PHESGO. I’m in denial about the weekly taxol at the minute but I have just read that maybe it’s better than three or two weekly? The thought of being at the hospital every week is daunting to me. I hate going there, all of my appointments I feel like I have put on my ‘uniform’ of comfy clothes that don’t feel like me really.
Anyway, haven’t got a central line yet, should get portacath fitted on 28th, first round of treatment was cannula on 14th June and went really fine. No horrific side effects yet! I almost feel like it is all a dream! But I’m taking the meds maybe once I start to wean myself off them I won’t feel as great!
Another side note I was a cancer nurse when I lived in England, it’s been 8 years but everything I learnt about it and chemotherapy has come flooding back and it’s been good for me to be able to explain things to my family and in understanding the way everything works. Although still very surreal to think I used to administer this stuff now here I am on the other side!
Love to everyone starting the new week with appointments and families to take care of.
I do hope your are all doing okay. I thought id give you a run down of my week for anyone who might experience similar. So first chemo Thursday June 6th (I had a portacth fitted under my skin on Wednesday 5th. Not sure this is a common thing its very new but all healed now and you cant even see it, no wires or anything visible which is great). I went with all the hair done and make up on to make me feel better. I am cold capping so they wet all your hair before putting it on. I definitely recommend taking two paracetamol beforehand and they told me I could. The first 4-5 mins for me I was unsure and after that I found it no problem at all. That Thursday evening I felt a little sick the best way to describe it for me as I am not normally a sick person was travel sickness. Like I had been looking at my phone whilst a passenger in a car that kind of sickness. I took an anti sickness and it went. The rest of the time the food cravings have definitely been there and I have gone off some food that I would usually like. Tiredness is there but I am a push through person but this isnt the right thing. Listen to your body and rest when you need it and I am definitely not good at that. I ended up, 8 days post chemo back in hospital shaking like a fever, with a temp of 38.3. IV antibiotics and fluids, temperature regulated and felt immediately better. Got sent home with a really strong dose of oral antibiotics 750mgs which didnt agree with me (either that or its the chemo again) Diarrhoea 6 episodes within a couple of hours and taken back into the hospital for checks. Actually feeling totally back to normal so all of this has just been my bodies reaction fo the chemo. Just to make everyone aware of these things thats can happen to some not everyone. They are talking about delaying my treatment which is due this Thursday again 20th June which I really dont want as I want to stick to my schedule but I will find out today.
I know someone was asking what to take to the chemo session. I took a warm dressing gown as I am cold capping but I dont have anything in my arms. I took warm socks but I didnt find that I was cold as the hospital was warm too.
Good luck everyone and apologies for the long post. Feeling great now x
@katyb1 welcome to the group. It’s all daunting isn’t it. I’ve been told you just get used to being on this conveyor belt of appointments and treatments, it just becomes the norm. I guess there’s something in that … but it’s still hard. I guess having experience from the other side will help maybe? You would have seen all sorts of side effects and the rollercoaster of emotions before! And Mallorca… gorgeous place! Does it help living somewhere so nice?
Thanks @kaydee82 … that made me laugh last night amidst my dark angry thoughts. It’s so easy to slip into a spiral of feeling awful but I guess that’s how it’s going to be over this summer.
@smt glad you’re feeling better now. The good thing is that all the various teams supporting us are completely ‘on it’ with sorting out any issues. Fingers crossed you can stay on schedule this week.
I wish I knew how to navigate this better. I just reply and hope for the best! Thanks Donna your right the team are fabulous and can get it all sorted pretty quick.
Hi
I’m starting chemo on Friday (21st) for 18weeks. 6 sessions. I’m post mastectomy and node clearance. Cancer in nodes. And large cancer in breast. so anxious about it all… keep thinking there’s still cancer about deciding how to get me… and feeling pains everywhere
Any tips for a smooth ride through first chemo session…
thanks
, would be interested to hear if anyone else had that and the outcome? Will persevere though so it was good to read the tip about paracetamol, I’ll try that on Monday. I found a thin bit of gauze on my forehead (high hairline) under the “brain” cap really helps take the edge off . Haven’t felt too bad really, just blazing hot face on day 2 from the steroids and some really achy legs, particularly if I’ve sat down for a long time so if anyone finds a fix for that one please let me know. Thank you all for posting your stories, it does help to know there are people out there going through the same. Take care all, chemo isn’t fun but we’ll get through it, one cycle at a time x
