Triple negative breast cancer

Hi Douglas 

I was diagnosed with TNBC in April last year and, like your mum, I had a lumpectomy followed by chemotherapy. My chemo consisted of EC every 3 weeks for 9 weeks followed by 12 weekly cycles of paclitaxel.

I found that for the first 10 days after EC I felt washed out and everything tasted horrible. Is this why your mum has lost weight because she's finding food unpalatable? If so, I found that if I ate spicy food like curry, chilli, etc then I could taste the food which made me feel like eating. I also found that pineapple tasted exactly the same on chemo as previously so I ate loads of that.

I lost my hair after about 4 weeks and it can be upsetting. Does your mum have any headscarves or a wig to wear? My hospital gave a money off voucher to use for buying a wig. I wore it if I was going out somewhere where I didn't want it to be obvious that I'd lost my hair. At other times I wore head coverings that I'd bought from annabandana.co.uk. They have lots of lovely designs.

I'm not good for drinking plenty of water but while on chemo I was encouraged by the chemo nurses to drink 2 litres a day. I found it hard at first but soon got used to it. It will help your mum not to become dehydrated again and also flushes the chemo through her system so hopefully she won't suffer as much from side effects.

The chemo nurses were keen for me to continue my normal activities as far as as possible so most days I'd go out for a walk. I only walked for an hour but it really lifted my spirits to get out and see something different other than the walls of my house. I avoided going anywhere crowded, because I didn't want to catch an infection, so going for a walk was what helped keep me sane. I know you said that she has no energy but could you go out for a short walk with her on your daily visits and just build up the length of time that she walks for.

As for whether she'll struggle on paclitaxel, all I can say is that I had no side effects while having it and my hair had started to grow back before I finished all the cycles. Obviously we're all different, but I'll keep my fingers crossed that your mum is like me and doesn't suffer side effects.

Edit - could you encourage her to join the Macmillan Online Community as it might really help her to connect with others who are at the same stage as her or who have already been through it.

x

Hi there Douglas,

It’s nice you have joined to seek some support around your mum and I’m so sorry for you and all of us going through this journey. Like your mum I was diagnosed with tripled negative grade 3 just before Christmas. I have had two rounds of EC, and if the next scan looks positive I will move to 9 weeks of weekly paclitaxel so our treatment regime has similarities except for the fact that my surgery is planned for after the chemo. I dont know how old your mum is but I’m 59 and also have a son checking in.

Fortunately I have tolerated the first two round of EC pretty good so far and these things have helped (although the first month after diagnosis was a rollercoaster!)

Making a conscious effort not to overthink/worry about the future

Getting out every day - even just having a coffee in the garden and noticing the signs of spring

Eating little and often with a mindset of doing something good for my body

Talking about things other than cancer

Good dramas on the tv (Happy Valley for me!) but having a lis of others too.

Checking in with friends and allowing them to be there for me.

The Breast Care Nurses - maybe they could check in with her more if she or you asked?

Finding the balance between ‘resting’ and ‘doing’.

Calming music.

Some new novels.

I really understand you both worrying about the side effects of the next treatment - it does seem from my own reading that many people tolerate pactilaxel better than EC. I know its hard but perhaps trying to let go of the over worry of the side effects (that aren't even there yet and may not come in the way you are dreading) would be I think would be so helpful for you both. Maybe doing a reframe on the drugs - ‘they are killing the cancer’, they are helping me return to being well’ ‘this period of life will pass’ ‘I will be strong again’

Finally is there a Maggies Centre attached to your mum’s treatment hospital? There is to mine in Leeds and its a total sanctuary of support for patients and their carers so its definitely worth checking.

Wishing you and your mum a smoother to come journey.

Jan

Hi, I’m so sorry you’re going through this. This nightmare just started for me and my mum too. 

I have no advice, just wanted to say you’re not alone. 

Take care

Hi Rina...

It's a hard journey..

I'm just staying as positive as I can for my mum.

If you need to talk please do message me 

Sending my love to you both

Hi...

Thankyou so much for your advice  

Thankyou so much for your advice