I didn’t cold cap and lost about 70% of my hair. I got used to having just whispy bits of hair. But now it’s growing again - 3 months since last chemo - most of the time I look like a cartoon character who’s just put her finger in an electric socket.
8 Likes
Oops. I haven’t framed that pic very well.
1 Like
Thank you ladies for all of your responses and photos! You are all great xx and @norts you look amazing with your gravity defying hair!! 
Gosh it’s such a personal thing isn’t it… the one thing you think you have a choice on, then with all the different possibilities of if and how much you will lose, it makes what should be a simple question so much harder!
I like to make decisions based on fact, but all I know for sure is that I find it uncomfortable, it may work, it may not work, but I will also probably kick myself in a few weeks when it’s all gone.
I have a feeling it will completely depend on how I feel in the morning. And if I’m still not decided, I have put a coin in my chemo bag to flip once I’m there…!!
3 Likes
You may have noticed this wonderful group now has another 3 community champions to help forum users, as well as themselves. I think this shows how fabulous this thread is. @salbert @gromit12 @galdiolus
19 Likes
And many thanks to all the community champions for their time and thoughtfulness
8 Likes
I did cold capping for 4 1/2 of my 6 cycles of chemo (my 2nd cycle was interrupted due to a docetaxel reaction, the 3rd they wouldn’t let me because of the previous reaction, then I was allowed to resume using it for the 4th when I switched meds and they had to conceed the reaction was nothing to do with the cold capping). I lost my hair regardless (head and body). However it has returned in abundance on my body (I remain unimpressed, I was hoping body hair wouldn’t return or at least be less hassle than previously), head hair is coming in but much slower.
I found x2 otc cocodamol tablets before cold capping helped far more than paracetamol but I appreciate nor everyone can tolerate codeine, as a migraine sufferer I’ve always found it more effective. Those first 30mins when the cap is put on are a right kick in the crotch though. Even though I could tolerate it I hated every second of it (my head would go purple every cycle wearing it). No idea if it’s why my hair has grown back but I’m telling myself it was so it was worth putting myself through it.
2 Likes
Definitely tell them you have questions that if they don’t answer before the end. I was told by my oncologist she was relieved I was able to advocate for myself. I keep a list of questions before I go in and then tick them off as the consultation goes on and then at the end reiterated if they’ve not explained everything I wanted to know (sometimes I add questions DURING the consultation if I learn something new).
I also would record consultations (asking permission first), after a while my oncologist started giving me loads of pamphlets and things to read and now at the end of my chemo, even though I don’t feel like I know that much, my clinicians all make passive aggressive comments about me “over preparing” as if my wanting some control and knowledge is a bad thing. Quite annoying if I’m having a bad day already.
3 Likes
Yes, I’ve noticed they can seem a bit edgy when you do your own research/reading, which makes me a bit suspicious! But then I guess they probably also see a bunch of folks who have ‘done their own research’ by watching conspiracy theory videos on YouTube so I can kinda understand the reticence a little sometimes 
2 Likes
They usually say stuff like “oh someone’s keen” or something equally patronising. I tell them I have no control over what they order me to do (other than refuse it) so I may as well prepare myself, that usually shuts them up.
It’s not as if I’m looking into ridiculous things, usually just things they’ve mentioned in passing so I know it’s a possibility it may happen.
2 Likes
Hi everyone,
Feeling a bit low and confused today.
Can I ask has anyone had a care plan call from their GP, totally not connected to the hospital?
When I received my diagnosis I received a text from my GP surgery saying sorry to hear etc… and that they will give me a call.
Anyway I’m feeling like I wish they hadn’t!
The GP sounded like she was reading from a script. When I mentioned my type of cancer - Grade 2 Invasive Ductal Carcinoma Oestrogen positive HER 2 positive, the response was “ I wouldn’t say it’s one of the better ones to have and to stay hopeful “.
I’ve gone from feeling positive which is how my BC nurse and surgeon make me feel, they are wonderful and I have trust in them. To now feeling very low and anxious.
I get my lymph node and surgery results tomorrow so think this is making me anxious too so not sure if I’m reading too much into the GP call.
Sorry for my rant, just wondering if anyone else experienced this from their GP?
Thanks everyone, love to you all 
6 Likes
Congratulations @salbert, @galdiolus and @gromit12, you will be fab (well you already are 
). And belatedly @arty1 ! 
6 Likes
@erica i am so sorry that you have experienced this from your GP. I think that many practices now have cancer pathway navigators to support their patients who are newly diagnosed. I know mine did. I was lucky as my cancer navigator is a breast cancer thriver so I think she was maybe more tuned in.
Please try not to worry about the comments that were made about the type of cancer.
The discovery of Herceptin has had such a positive outcome for those diagnosed with HER2+ breast cancer. If the service isn’t helpful to you from the GP surgery maybe speak with your own breast nurse or of course the BCN on here.
5 Likes
Hi @erica
My experience of gp knowledge about specialist areas is that they tend to be out of date! Communications from consultants often take a while to get onto our records. My practice rang me in January to ask what was going on as they didn’t know! I found a letter on my my gp record that updated them but they evidently hadn’t picked up on it. Years ago my daughter had treatment for leukaemia and its was exactly the same them. My advice is stick with your care team’s information and leave the gp out of it! And by the way my daughter runs ultra marathons, got into the RAF despite her medical history!
6 Likes
@erica that is an outrageous response from your GP. Surely they would have already got this information from a letter from hospital. Complete lack of care and support there 
hugs xx
3 Likes
Hi, @erica , that’s awful from your GP practice! Personally they should leave it to the experts if they are not going to be supportive. A simple call to ask you how you are getting along and saying that they are there if you need their advice would be sufficient. I was a bit miffed that my surgery never contacted me again after my referral, but perhsps that was a good thing. You are bound to be anxious about your surgery results but it sounds like you have a good team at the hospital and they will have a plan whatever. Good luck for tomorrow. Big hugs. X
Penny
4 Likes
Thank you so much everyone, you all make me feel much better. Such a lovely supportive group .
I’m going to just listen to my hospital team and try to forget the GP call.
It’s a beautiful day and the sun is shining here so I’m out for a walk along the beach, best therapy.
Lots of love
3 Likes
Hi @naughty_boob… thanks so much for being here for us all. I have a question about cold capping. I went to see my oncologist yesterday, and now know that I will be on the EC-T regime; 4 x EC every fortnight, followed by 12 weekly Paclitaxel, with trastuzumab, every 3 weeks. I’ve looked at the Paxman calculator, but it doesn’t have EC-T as a combined regime and when I try the drugs separately, The E & C return no score. I know a lot of ladies are on this regime, so wondered if I was doing something wrong. Any advice would be gratefully received.
1 Like