TNBC

Hi DenM 

I was diagnosed with TNBC grade 3, stage 1 in March last year.

I had a lumpectomy first, followed by 3 lots of epirubicin and cyclophosphamide (once every 3 weeks) and then paclitaxel every week for 12 weeks followed by 10 days of radiotherapy.

With the EC I felt tired for about 10 days after it had been given and then fine for the rest of the time up to having it again. The paclitaxel didn't give me any side effects.

I did loose my hair after the second dose of EC but it started to grow back while I was on paclitaxel and, by the time I'd finished my radiotherapy, I had enough hair to feel confident that I didn't need to cover up or wear a wig.

Ok thank you, I’m having paclitaxel and carboplatin and will also be having EC. Did you try the cold cap? I’m prepared to lose my hair but thought I’d try anyway 

No, I decided not to. My main reasons were that it would add extra time either end of the chemotherapy session and also I didn't fancy having something that cold on my head for so long.

I kept my hair for about 4 weeks but when it was more obvious I was losing it, I got my husband to use his hair clippers on the 1cm setting. I'd previously had it cut into a shorter style, as it was way past my shoulders, and thought it would be more upsetting to see long sections of hair coming out rather than shorter bits. I never went entirely bald and always had a fuzzy covering.

I guess I was lucky in that I had my chemo during the summer as it was quite nice and cool to be able to go around the house with no hair when it was hot outside.

Are you doing the cold cap?

1. Yes I tried for the first time on Thursday and was super cold, when I finished I literally had icicles on my head/ hair which was weird! I will see how I go but totally get it with the length of time though. I have sister locs which are down my back but will cut then and maybe be able to have them put back in as extensions or might not, not sure yet. I used to have a number 2 about 25 years ago so don’t mind if that’s what I end up going back to in the grand scheme of things, might be good to try something else for a while xx 

I'd had long hair for decades but now have a really short style which I love but would never have dared to have tried before.

I totally agree with that and to embrace the changes that we are going through x

Hi DenM 

I have TNBC, Grade 3. I’ve had a lumpectomy and am now onto chemo. Had 3 rounds of EC and now onto 3 rounds of Docetaxol. The EC was tough and really gave me a foggy brain. I cut my hair off before any chemo as I knew it would fall off and didn’t want to be fixated on it. Glad I did as it was much less distressing when it did start falling out after the first round of chemo. 

I’ve had 1 dose of D so far but the effects are so different. No foggy brain but so much aches and pains. Like having flu when all of your joints hurt. My nails are so sore as well and my skin is really dry.

Worst by far is the loss of taste. I love to eat so have found it hard to taste nothing. Really made me feel sad. 

I’ve heard that radiotherapy isn’t as bad as chemo. Let’s hope not! 

Hope your treatment goes ok! 

Hi Opalfruits 2001, wishing the same to you, do you know when your tastebuds will come back? I too love my food and will be sad if I couldn’t taste anything especially this time of year! First sign of my hair coming out then I too will cut it off and just try and focus on getting on with things. So good to message someone going through the same, although they haven’t suggested an op for me until after chemo and not sure if that will change depending on chemo progress xx 

They’ll do the op after your chemo as they want to shrink it probably. 

Not everyone is affected by the taste but mine has been bad on both types of chemo. You have to watch it doesn’t develop into oral thrush as that kills off your taste buds even more. I’ve had it the last 2 cycles which has been horrible. 

I have chemo next week so I know Christmas is not going to be good for taste for sure. Sucks as that is the best bit about Christmas! Oh well. It could be worse. I often have to tell myself that there’s always someone going through worse so get on with it. That helps me. 

Oh my days totally agree! We put our big girl pants on and get on with it ️