@salbert -I’m looking forward to saying goodbye to insomnia and hot flushes
I just need my thyroid to sort itself out now as it’s not being controlled anymore by my meds and is entering under active territory again . I’d so love to see you with way electric blue hair !
@magl -I’m so sorry you’ve had a cardiac scare , have you had an echo ? They may well delay your next herceptin until they can establish they are happy with your heart function or can prescribe medication .
If your ejection fraction has dropped they can prescribe ace-inhibitors as @salbert had these prescribed and her heart recovered . The reason they monitor your heart so well is to enable them to jump on any changes quickly . Ejection fraction is the rate at which your left ventricle pumps blood , a normal EF is between 50-70 ‘%
It is possible they might decide to stop you at ten , however without them knowing the full picture they can’t make any decision, they’ll make a decision based on what’s best for you , but don’t panic . A study called the Persephone study has researched whether 9 injections gives the same protection, its early days but results are promising. My consultant is stopping me at 9 as my body is not coping well with it , I’m very allergic to it and have to have full chemo style pre meds before having herceptin by infusion over many hours .
@maria1970 -I think losing hair is a very real fear for all of us , it’s our identity , I don’t know about you but My hair was something I hid under … so I feel very exposed and vulnerable , hence I’ve gone crazy with wigs and I’m having great fun with them . Donating your hair is a lovely thing to do x
I’ve no experience with minoxidil I’m afraid , however eight weeks since finishing chemo I now have a full beard and a moustache . And I’m female on a serious note . I’m having to shave my legs and remove my facial hair , my hair seems to be growing back well x @caz I’m really sorry you’ve been left reeling by your appointment, there are a few ladies on here who are having kadcyla who can hopefully reassure and support you . The wonderful thing is that we now have so many targeted treatments x @sez it sounds like a busy weekend! I loved that film , such a cult classic , her look was very in vogue in the sixties… very biba
We are a bit fed up as my husband was supposed to start a new job this week and his dbs hasn’t come back in time so now his start date has been pushed back a month … with Ito likely not being until June due to DbS delays … another failing system by the looks of it . We currently have limited income due to me not being able to work as unfortunately I built my business on me as the lead artist so bookings dropped down , I’m wondering if there’s a market for me on only fans
@arty1 your reply made me laugh out loud… why is that the hair we dont want is the first to grow back!
Donating my hair really comes from a place of wanting to turn something awful into a positive. My hair has always been my crowning glory, so the thought of losing it has really affected me. If a little girl or boy can benefit, then I’m all in.
Did you cold cap? As you know, I’ve decided not to bother, but I have heard that it can encourage faster regrowth… just wondering how long it will take to grow back without cold capping.
@maria1970 - Honestly I couldn’t believe it when all the unwanted hair came back ! It’s been a dream jumping in and out the shower and now I’m back to razors and looking for my facial hair remover !
I didn’t cold cap and I lost every hair on my body , now eight weeks later my lashes are back and so are my eyebrows , I’ve attached a pic of my eight week post chemo head .
My now 15 year old donated her hair about 9 years ago to the same charity , she’d grown it really long , it’s such a lovely charity and
Hi marymop.
I’ve met other people on EC with no bad reactions. I think my problem is that I’m ultra sensitive to everything apart from Paracetamol!
Have you already had surgery? I’m having mine after chemo. Most people I’ve met have surgery first.
X
@arty1 Wow… that’s amazing. I didn’t realise the regrowth was so quick. You look amazing BTW. Thanks so much for sharing your experiences, it makes such a huge difference to all of us who are just getting started on this wild journey.
When did your lashes and brows start coming back? I’m 6 weeks from last chemo and hair is coming in thick and fast (started before I finished) my brows and lashes came back as well but then fell out again and no sign of making a return yet……
@woody2 Mine seemed to come back all at once about 2 months PFC. It depends on how long your lash/brow growth cycle is because that can vary. Normally we don’t lose them all at once so we don’t even notice. I used the UK lash stuff on both my lashes and brows. Not sure if that helped but I felt like I had to do something!
@anb1 I wonder if you’re at the same hospital I was at for the first part of my treatment. That sounds like my experience early on and the size kept changing which ended up working me into a tizzy but my surgeon explained that it’s really hard for them to size the tumour until they actually take it out and physically measure it. Callipers and ultrasounds are great to get the general idea of sizing but its not 100% foolproof. I had ultrasounds regularly throughout my chemo, so it’s normal to have scans.
@sez good luck with your first Kadcyla! I hope you’ll be one of those that experiences few/no SEs.
@caz591 I was where you were back after my surgery when I was told my doctor was recommending Kadcyla for me due to the fact that I had residual cancer. It’s a real gut punch when you think you’re going to be going one way and you get sent on a longer, more meandering detour. I know it feels really shit right now but there’s lots of us that have been in your same position and we’re here for you if you want to vent/chat. Sending love your way.
@mrsjelly What a cutie! I’ve got my little pup sleeping by my side right now and her love and cuddles are such a benefit to my mental health.
Mine took well over a month (sounds short but certainly didn’t feel it at the time). I did lots of massage with rosemary oil on my eyebrows and head. Eyelashes I left alone (and still ended up with a stye).
It’s easy to say “be patient”, I was more upset about temporarily losing my brows and lashes than I was about permanently losing half a boob. Hang in there though, I think they take ages cos you have to wait for a follicular cycle to begin and they grow much slower on your face.
If only hair grew as fast on head and brows/lashes as they do legs/armpits etc.
@maria1970 - I look better with wigs ! I feel like a potato without them ! However it’s been really satisfying to see the hair coming back x it’s really soft too like baby hair , this is probably the first time I’ve had fresh undyed hair for forty years !
@woody2- They only started coming back about two weeks ago and seemed to return overnight !
Hi everyone having a bit of a wobble last few days.
I just want to ask ladies who have had node clearance… the side where its been cleared does it feel warmer than the other side sometimes? Also my shoulder blade aches sometimes on and off… please tell me its normal
Just to encourage ladies early in their journeys. We are the April 24 chemo starters and met up for the first time last night. Today we did the Bath Ultra Challenge 10km for Breast Cancer Now. There is life ahead, and you will get through it. Most of us are still on some form of treatment and three of us are still on Kadcyla! Hang in there ladies
I had full node clearance (only one had scarring so didn’t even need it probably, oh well) as well as lumpectomy. I don’t feel a difference in temperature but it’s still achy, numb and feels like I’m constantly carrying something hard under my armpit. Been told this will improve with exercise (it has and hopefully will continue to).
I hope this reassures you. Maybe check with your BC nurse or the hotline if you’re worried about infection (maybe use an under arm thermometer? See if it’s a real difference or just feels different cos you’re post surgery?). My oncologist always says never be afraid to call the hotline, they’d rather you call and it’s nothing than it’s something and you suffer in silence.
Hi @jeml
I had a double lumpectomy and sentinel node biopsy. They did it all with one incision so stretched the surrounding area quite a bit to reach the nodes. I have suffered with discomfort in armpit, the chest wall, the muscle form chest wall up to shoulder, neck/shoulder pain and cording both sides, even though I kept up with my post surgery exercises( still do).
I was referred by my breast care nurse to a physio who thought I had nerve issues, which was the case but she missed the cording and dismissed the chest wall issues. Mainly because she admitted she lacked cancer treatment knowledge. I was the referred to a cancer physio and have more exercises and stretches to help with issues. I don’t remember any warmth/ heat issues.
If it was me I would call your breast nurse for advice. They may call you in or you could ask for a cancer physio referral.
Sorry you are having a wobble, you have been through so much at such a young age with a beautiful little girl. It’s ok not to be ok, but you may benefit from some counselling or supportive courses. Did you do the BCN Moving Forward course? MacMillan have a HOPE course. Maggie’s also run a What now? course. MacMillan no longer do counselling. Penny Brohn charity have a fortnightly Connect course where you can talk via Zoom to other primary (all not just breast) cancer patients with a trained counsellor. They also offer counselling, which if you’re not local to Bristol area, you can do over the phone or Zoom (I think). The waitlist can up 3 months. Let me know if you want some links.
on a serious note . I’m having to shave my legs and remove my facial hair , my hair seems to be growing back well x
