Hey @feck (great name btw) I’ve soaked up every word, thanks for sharing in so much detail.
It’s actually really promising to hear that your lived experience is not as bad as you feared. It gives me hope
Can I ask what SE is? Sorry, I couldn’t figure it out so I’m curious.
We all have to do what’s right for us personally. I don’t have much family and I’m a regular volunteer with a learning disabilities charity doing lots of great social stuff. So my withdrawal around surgery and my complete inability to lie meant I told people but played it right down. Early stage, very treatable etc.
I’ve found the support really lovely but yes I agree sometimes especially after results you feel a responsibility to look after everyone else.
There is no right or wrong way, only our way. We are the ones experiencing this and it’s mad how off the charts the whole thing is. So good for you making your choices known and having your boundaries.
I want to get on with it now. But also want to try to be as normal as possible for the next 3 weeks. I think chemo will start then.
Thanks for sharing your tips, really appreciate it x
Hi @warmfuzzies - SE is side effects amazing what you learn from others reading these forums! and agree, it’s a unique for journey for all of us (we are all unique after all). We can only do what we can do - I’m doing what I can for me in my own little way which definitely won’t be right or the same for others. I think whatever gets us through right? Huge hugs for your first cycle I hope it’s not too bad. It won’t be great because just mentally it’s so hard! but take the good days when they appear x
Hi everyone! Joining the March group as well. I was supposed to start my chemo tomorrow (February 24th) but got a nasty cold 3 days ago so they had to move it such a bad timing…As many others I find waiting part the hardest, especially with such an aggressive lump.
I’m 35 and I was diagnosed with tripple-negative BC stage 2, grade 3 in January. I have no children so I was offered to freeze my eggs, which I did. 5-6 months of chemo ahead, then a surgery. Will start with immunotherapy (pembro) + paclitaxel + carboplatin. Mostly scared of pembro, it seems many things can go wrong there.
I’m kind of a control freak so I already visited a wig store and will cut my hair short next week in an attempt to minimize shock of losing hair in 4 weeks.
Thanks everyone for the tips and lots of love and strength to all of us!
I had the same chemo drugs 2 years ago and apart from being dehydrated on 1st EC ( my fault as i wasn’t drinking enough) i thought EC was easier than i was expecting. My only side effect was the fatigue and as i worked 50 hours a week in a busy kitchen i threw in the towel and went on sick leave just before my 3rd ec . Docetaxol was a bit harder for me and i had to have the dose reduced. On the whole chemo wasn’t nearly as bad as I expected. I didn’t cold cap and had lost most of my hair by the 2nd round but i had a wig ready and plenty of hats lol . Good luck with your treatment xx
We’re so sorry to hear what you’ve been going through - a breast cancer diagnosis is stressful and hard enough, without everything else on top of that.
Please know that we’re here to support you, and our nurses are always willing to lend a supportive ear as well as being able to answer any questions you might have. You can reach them on our free helpline on 0808 800 6000, Monday - Fridays 9 - 4 and Saturdays 9 - 1. People ring our helpline for all sorts of issues relating to breast cancer, including relationship issues, so please do feel like you can talk to them about anything.
Hi everyone, I’m Sam I’m due to start chemo this Thursday the 27th EC fortnightly, I have 2 children 9 and 5 years old and I’m currently 23 weeks pregnant with my 3rd so we’re going through this first part of my journey together! My cancer is HER2 positive so I’ll need some further treatment after baby is born and surgery. I’ve decided not to do cold cap as I didn’t like the odds. Im a little nervous of what’s to come but also pleased to be getting somewhere now as I was diagnosed in November so it feels like a long road already just getting to this point. Wishing all my fellow March starters the best x
Hi everyone, I am starting chemo on Thursday 27th, all happened really quick. Assessment and bloods tomorrow, port Wednesday, Echo Thursday morning and chemo Thursday afternoon. I’m thinking of giving the cold cap a go and see how I get on. It would be great to keep in touch on all our journeys to share tips and experience. I was also thinking of maybe trying to learn a language during my treatment but not sure how the earphones will work with the cold cap?
Welcome everyone! So nice to have this support group and to not feel alone
I’m starting my chemo tomorrow despite the cold. A bit scary but I’m glad to finally start it after 1,5 month of waiting. PICC line installation right before the chemo session.
Have to swallow 19 pills tomorrow morning I feel it might be even bigger challenge than chemo itself
Hi I am due to start chemo mid March 2025. I had lobular bc and nodes infected. I am nervous about chemo. I have ordered a wig and trying to process it all x
Hello fellow March starters.
I have my new patient chemo assessment tomorrow, and will probably start chemo (EC + paclitaxel) next week.
Diagnosed in October, after finding a lump. Unfortunate delay, owing to anaphylaxis at first surgery attempt. Surgery completed five weeks ago, for bilateral lumpectomies (grade 1 & grade 2) but post surgery biopsies confirmed 4/12 affected nodes, so I’ll need axillary clearance after chemo.
Nervous (who isn’t?) but it has to be done!
Good luck and best wishes to all of us x
I’ve now got appointment 4th March to get bloods. Still waiting on genetics results, doctors are hoping to get this back by the time I’m due second half of chemo, so they can plan any further treatment necessary.
I just had a phone consult for holistic needs and I’m being referred to counselling and complimentary therapies, I also mentioned I’ve been getting twinges/pain in left breast (had DCIS 10 yrs ago) but cant pinpoint where its coming from, can’t feel any lumps, I’m concerned as nothing could be felt on my right, so she is contacting my breast care nurses to get me an appointment to possibly do ultrasound and put my mind at rest, I realy don’t need this added worry, has anyone else felt twinges elsewhere, did you get it looked at ? I had mentioned this when I got my post op results and the nurse said she hears this quite often.
Great when things are moving @cruising
Sorry to hear about your concerns, I can imagine it can be nerve-wracking… Good that they are getting you an appointment!
How much does it take for the genetic test to results to arrive at your place?
Had my 1st chemo session today
Honestly, it went much better than I expected! I was in a surprisingly good mood, my nurse was very nice and talked to me a lot about the treatment + my doctor popped up and answered my questions, so that was great.
The whole session took 3,5 hrs (I have 3 drugs + rinsing in between) and I could just chill, listen to music, read, be on my phone…I came out quite rested I wish all seasons were like this.
My PICC line installation didn’t go as smoothly though, they managed to get it in only on the third attempt so I got a bit annoyed there, almost regretted that I didn’t choose a port instead…btw I was told that I could do literally anything with the PICC line, no limitations whatsoever but when I google or ask chatGPT, all articles say to limit the activity with the arm quite a lot. It’s interesting to hear what recommendations you guys will have
Hello @sam40 . Wishing you all the very best. Have you been put in touch with Mummy’s Star, a charity supporting women and their families diagnosed with cancer during pregnancy? Look them up if not https://www.mummysstar.org/about-us.
I didn’t cold cap. I lost all my hair, everywhere. Its growing back really well. Peace and strength to you.
Hi all - Day 10 and in rude health (perverse isn’t it!). So far so good.
Had 4 Filgastrim jabs so far. Take them about 7pm and go to bed between 1000pm and 1100pm. Have taken 1 paracetamol ‘in case’ each night so don’t know if they’ve made a difference or not but I’ve had no issues, no pain, no nothing.
No sense no feeling right? Anyway wanted to share as some of you will be starting them soon and I had been worried about them. Only my own experience I know - hope they’re plain sailing for you too
Now trying to get my physical activity up (walking only though I know some are running etc but that’s a step too far for me at moment )
Thanks for the message, so encouraging to hear. I start tomorrow and had my pre-assessment yesterday where they really emphasised the risks and when to call A&E which was a bit scary. How are you getting on with the cold cap?
I put in my first post - my own experience was totally doable (grin and bear the first 10mins and take two paracetamol 20mins before it goes on to help with that first bit)
Make sure it’s a tight fit was advice I had from wig hairdresser and no warm spots - we crammed on the small size cap and I was happy I couldn’t feel warm spots or gaps (which I did on top of my head with the medium cap)
Too early to know what if any effect but I figured give it a go - I know I’ll lose my hair it’s just a case of how much. If it goes it goes so I can only gain by trying it
I managed a nap wearing the cap if that helps (after all the drugs injected)
It really is like the lady in the video link I posted said - being outside in a chilly day with maybe slightly damp hair
If it had been awful I’d have stopped but have to say was pleasantly surprised
amazing what you learn from others reading these forums! and agree, it’s a unique for journey for all of us (we are all unique after all). We can only do what we can do - I’m doing what I can for me in my own little way which definitely won’t be right or the same for others. I think whatever gets us through right? Huge hugs for your first cycle I hope it’s not too bad. It won’t be great because just mentally it’s so hard! but take the good days when they appear x
such a bad timing…As many others I find waiting part the hardest, especially with such an aggressive lump.
I feel it might be even bigger challenge than chemo itself
I wish all seasons were like this.
sorry about your picc hopefully nurses can reassure!