Breast Cancer Now Forum

Hi to both of you, hope you're both doing OK after your first treatment xx ... View more

Hi Monkeynuts and York-75, sorry not to have replied sooner than this.  I had my last Abraxane last Wednesday and have had two radiotherapy planning appointments this week, so not much rest for the wicked! I can confirm that you will pretty certainly lose all your hair.  My first lot of chemo was four rounds of EC which did away with about 98% of my hair but it started to grow again a week after the last treatment.  Several weeks later it was 0.5-1cm long and I was very happy.  Unfortunately the first round of Abraxane made it fall out again which I found very, very hard - almost harder than the first time.  My eyebrows have given up the ghost completely now though I still have a few rather ragged looking eyelashes.  Best news is I also have half a millimetre of very fine hair over most of my scalp, though it's completely white! I had most of my Abraxane with Carboplatin so it's hard to say exactly which side effects were attributable to which drug.  I did find that my immune system dropped like a stone about day 4-5, which combined with significant low mood.  This would improve as my immune system recovered.  I had quite a lot of pain with the treatment, including terrible headaches which would be concentrated in my ears, jaw and round the base of my skull.  Co-codamol helped with this, as well as helping to counteract the diarrhoea which was pretty bad at times. However for me the main problem with the treatment was peripheral neuropathy.  Nothing after the first round but suddenly, on day 4 of the second cycle, wham out of nowhere my hands hurt.  No warning tingling or anything.  This got steadily worse for a week until I rang my BCN in tears and the team were alerted to my problem, which was mostly in my fingers though I do still have numbness in a few toes.  My last treatment was delayed for a week, and then for another, as the oncologist was keen for me to have as much treatment as possible but not to cause permanent damage and loss of function - the pain was concentrated in the very tips of my fingers, which we use for fine motor control, and I was having problems  with loads of everyday stuff (buttons, pens, turning pages, pressing any kind of button on devices, judging the strength of my grip when picking things up - my phone got dropped a lot!).  It had finally improved enough for me to have my last dose last week, no Carboplatin and an 80% dose of Abraxane, and the neuropathy hasn't got any worse again so hopefully it'll gradually resolve. Sorry if this all sounds like a complete horror story - I found this regime much harder than EC but everyone's different and you may well have different side effects or not suffer nearly so much as I did.  Lots of luck and love to you both, keep checking in because support from people in a similar position is so helpful xxx ... View more

I had 4 cycles of EC and lost most of my hair, was delighted when it started to regrow about a week after the last cycle.  I then switched to Carboplatin and Abraxane and was horrified when my six weeks of regrowth started to fall out again.  I'm now pretty much completely bald, and the eyebrows are on their last legs.  Still have some hair on my legs, which is annoying!  So I'm afraid you may well lose your new hair.  I really struggled with it, it was devastating the first time but felt like a real kick in the teeth when it all  happened again! ... View more

You sound very organised, Mrs Kettlebell, glad you've found products that suit you.  Good luck with the rest of your treatment ... View more

I've also found that the skin on my face looks a good 10 years younger during chemo - shame that's not going to last... I've kept on with my usual mix of Boots No 7 and Clinique and it's been fine The skin on the rest of me was a different matter - started getting extremely dry within days of my first cycle.  My chemo nurse recommended Aveeno and I use the most high-powered items in the range for showering and moisturising.  My skin hasn't been so soft for years!  Might be worth a look for you ... View more

Hi, we’re in a similar position, I’ve done four rounds of EC and start weekly paclitaxel with carboplatin next week. Hope you’ve managed OK so far and good luck with the next stage, lots of new side effects, can’t wait! 😯 ... View more

Make sure to let your team know about that sensation, it’s something they’re going to want to keep an eye on! Stay strong all xx ... View more

Thanks for these tips Daisy, my husband has to inject me for the first time today and we’re both pretty anxious about it! Welcome mumbear, hope you’re feeling OK and there’s lots of support here xx ... View more

I also had a pack from the cancer hair care people. They were really kind and resent it because the first one got lost in the early lockdown chaos. I’m very impressed with all the walking - shielding is sending me bananas, I only live half a mile from the Thames but haven’t seen it since before chemo started. Not sure I can keep it up for ever ... View more

I’m getting the hungover feeling bigtime this time round. Second day in bed completely zonked! No nausea though which is a huge plus ... View more

I was given Difflam this time round despite having no mouth problems at all in my first cycle. Do you think I should use it as a preventative measure? The pharmacist didn’t really seem to know why I had it You're very brave to go for the shave Fiona! Hugs to all xx ... View more

Yes I'm dreading eyebrows/eyelashes too.  I find I can work the buzzcut with some makeup and attitude but when the facial features start to disappear too it'll be so much harder! Good luck for Wednesday Fiona, hope you find it easier this time round.  I'm not halfway through anything unfortunately... ... View more

I took the plunge yesterday and got my daughter to take the clippers to my hair.  It had started to shed gradually and I found waiting for it to get worse more upsetting than getting rid of the lot!  It's now very short - shorter than the 12mm setting on the clippers would suggest!  A few tears were shed but at least I feel like this is happening a bit more on my terms now.  No sign of leg hair falling out, worst luck! Cycle two of EC tomorrow.  I'm dreading it, have been feeling physically very well for the last week and don't want to feel **** again.  I hope they can do something so I don't end up neutropenic again Three weeks down, 21 to go... Best wishes and hugs to you all xx ... View more

Yes my temperature also seemed to hover about 36 in the first week after treatment.  Which meant when it went up to 37.7 and I felt rubbish I knew I needed to do something about it! (Three days in hospital later...) Sorry you had a scary experience Trish but glad you're weathering it.  I'm just near the end of my first cycle now and wondering what the second will bring! Enjoy the sunny weekend everyone (carefully of course!) xx ... View more

It is great to be able to chat about our concerns, isn't it?  I think like the chemo itself the anticipation of hair loss itself is the worst part - that and the actual process of it going of course!  Once it's gone it'll be yet another new normal to adapt to and we'll just get on with it (though my treatment schedule is so long it'll probably be some time next year before I have anything resembling normal hair again...) ... View more

Wow Naomi, EC every two weeks sounds punishing! I felt sick the first week and spent half the second in hospital, it's a blessed relief to have this third week of feeling fairly OK to recover.  Fiona, thanks for the hug, I drop into the May thread occasionally so will have a look there xxx ... View more

Hi Fiona, as you know I'm one day ahead of you, also with EC, and yesterday I had my first evidence of hair loss.  My hair has gone soft and floppy in the past week but yesterday I was putting some product in it after drying and my sticky hands came away with quite a lot of hairs stuck to them.  There's obviously no visible difference yet and I've had no discomfort in the scalp but I've no doubt that the hair loss is starting.  Don't want to wash it tomorrow now!  Feel quite tearful, I know this was going to affect me badly but now it's staring me in the face it's even worse.  I guess the clippers will be soon be called for ... View more

Glad you’re doing ok RainbowJoy. I had those injections while in hospital and I’m sure they made a big difference.  ... View more

Next treatment due 19 May. I don’t really have any other side effects at the moment but I expect something will turn up! Take care Fiona xx ... View more