@preferablywithfood hope your appointment goes well x
Hi everyone, and welcome to the best forum ever! I was an April 24 chemo starter. I had ECx3 and then Docetaxel X3. I cold capped which I found tough and it did extend the chemo day significantly especially with EC, but I kept most of my hair, it just thinned for which I was so grateful. I also had a PICC line. I was petrified of being sick, but wasn’t once. When they give you anti sickness medication take it regularly, don’t wait to feel sick as it’s harder to then control. I had surgery in August and then radiotherapy in October. I was very fortunate and loved a relatively “normal” life during chemo, and I want to encourage you ladies not to expect to feel ill. My view was I was well but every 3 weeks they kept trying to poison me and I was going to fight it! I kept running during chemo- though my oncologist told me I wouldn’t be able to! That was red rag to a bull!! I walked everyday which really helps bone and muscle pain. And fresh air does wonders for your mindset. If you have to have filgrastin injections during chemo- helps stimulate white blood cells, to reduce risk of infection, then these do cause bone and muscle pain- I found giving them just before bed, with ibuprofen half hour before and daily clarityn really helped. I also wore compression socks during chemo and 24/7 for a week and continually overnight, and really helped with neuropathy. You’ve all got this ladies, you’ll have highs and lows but we’re all here to support each other xx
8 Likes
Hi
I’m wondering if anyone has had problems with feeling faint and dizzy after EC and cold capping?
I had my first EC last Friday. Felt fine for the first couple of days, but since then can hardly walk anywhere without feeling like i will faint. Have a sort of numb feeling on the back of my head. No high temperature or anything like that.
Just wondered if anyone has had a similar experience?
Take care all x
@murphysmum are you drinking enough, particularly in this warmer weather? If I was dehydrated I felt dizzy xx
1 Like
Hi
I think i am, thanks
Im having a couple of litres of water per day.
Not eating a lot because of the dizzy feeling.
Maybe it’s related.
Will ring the 24 hour line as it just seems wrong to be like this.
Thanks again x
2 Likes
Hey peoples. Lovely to see new names on this little group.
I had my first EC today. I was lucky with cold cap and actually found it pleasant. No sideffects yet apart from nausea (even after taking everything).
Yesterday i did a pre chemo run and ive just tried my first chemo run. I anticipate feeling tired on day 3…
Re work ive provisionally planned some remote working with reduced hours cos id really miss it. But im also open to that not working.
Sending you all good wishes for the days ahead and courage for what is to come.
6 Likes
It did thanks. Every now and again reality smacks me in the face and it did today when I saw a lady who had lost her hair and heard someone ringing the bell.
More fun times - when I was biopsied I was HER negative but learned today that I was now HER +. So my tumour was bigger, in more nodes, more aggressive and now HER+.
I’ll be doing 4 EC and 4 Docetaxel, but don’t have a start date yet. I might just sneak into this thread or I may be joining the September starters.
3 Likes
@preferablywithfood, I’m so sorry to hear that, I didn’t even realise you could go from HER2- to HER2+. Does it change the rest of your treatment plan?
I had a similar experience yesterday with the reality hitting home, I spent the whole day feeling sick and anxious. Feel a bit better today.
I don’t have my start date yet, but I have my first bloods and ecg on 18th, so hopefully will start the following week xx
3 Likes
My HER was borderline at biopsy, so was tested again and came back negative - with the caveat that it would need to be tested on a bigger sample after surgery. That new test came back positive.
So it’s not changed really, but I think the first result was probably a " based on all available information" diagnosis.
It doesn’t change anything much now. I’m ER+,HER+ so will no longer need Abemaciclib (yay! Spelt that right!), but will still have hormone treatment & radiotherapy.
It did occur to me that if they’d have known earlier, I could have had chemo before surgery and maybe could have avoided a mastectomy if the tumour shrank. But they didn’t know, so that’s nobody’s fault.
And I could have still needed the mastectomy anyway, who knows?
We know exactly what we are dealing with now, which is the important thing!
4 Likes
Hi
Just in case anyone has the same problem…I rang the Northern Centre for Cancer Care regarding the dizziness and faint feeling I’d experienced the past few days, and its a possible side effect of cold cap. So, pleased to find out that it will wear off! Think im 98% sure I’ll ditch the cold cap and just go with the wig and scarves. Shame, because id really wanted to keep some hair, even though its short and thin at best!
Take care all
x
1 Like
@louise15 Thanks so much for your reply. The day went well although I had to wait a long time to start… Tried the cold cap and it was ok. Am used to cold water being a UK scuba diver 
Your thoughts on what I can control and not have helped me in my approach to this horrible illness and I am hoping to stay positive throughout the long haul. I am feeling fine today, done some jobs and listening to my body so not ramping up pressure. Great supportive forum. 
3 Likes
@sunshine-smile some people cold cap fine, and can tolerate it well it just wasn’t for me at all. That’s my worry as well, which was why I wanted to at least try the cold cap - that it may grow back thinner or not at all!
the wig thing was quite stressful because I just want to look like me but there’s no wigs just like that so decided going to be a little adventurous and maybe try different things - a reason to try things I maybe normally wouldn’t! 
try to have some fun with a shit situation!
Thanks for the tips on the wraps, I’ll check her out. I’ve gotten a couple through a lady on Etsy too which are cute, ill send her name over if you’d like 
2 Likes
@gromit12 that’s so good to know you still were running! I’m usually very active - classes, strength training, up mountains etc so knowing I have to take a step back from some of it for a while is hard. Decided to get back into running while I go through this so knowing you managed has gave me some hope
I am doing the injections, so really have been focused on walking as heard that can help with the pain however as yet I haven’t had any - though I’m only two injections in!
I’ll definitely need to bear in mind the tip for the anti-sickness and the compression socks is also a good tip, thank you!
Hope you’re doing well now x
2 Likes
Hi @outdoorsy how are you feeling today? Glad the first treatment went well and you managed the cold cap - I actually really admire that!
@scubacat ah, you’ll be well experienced in tight cold caps then! That’s so cool you scuba dive Glad the first treatment went well. I think trying to be positive but realistic is the best approach to take, and yeah putting no pressure on yourself at all! That’s always my way of seeing things though, can I control anything here? If no, let it go, if I can then what’s the plan (did not mean for that to rhythm but sticking with it haha)
@louise15 yes please! I’d like to get a variety of styles and colours so would be good to get from recommendations x
2 Likes
I got my start date today, Tuesday 26th August, so a couple more weeks to wait and get organised. I’m going for my first visit to the unit and pre treatment assessment on the 18th x
3 Likes
Had a call today for my appointment to have my PICC line fitted on Thursday next week with a treatment starts date of 18th August, spoke to my Private Medical Insurers today too (BUPA) who told me I can claim up to £100 for a wig and also claim for treatment that is provided in the NHS, didn’t even know this so a nice surprise but would rather not have the cancer:disappointed:
2 Likes
Hi
Had my second chemo this week and persevering with the cold cap.
So far so good with regards to hair loss.
Have had hair cut short so hoping that will help with any hairloss incase it happens
3 Likes
I have same with Axa PPP can claim £50 per day up to a maximum of £2,000 for chemo and radiotherapy under the NHS
2 Likes
@louise15 Try a style with a fringe and see how it looks. This is one of the only times you can try any style you’ve fancied over the years without the worry of having to grow it out if you don’t like it 
1 Like