New and overwhelmed

Hi Spooky1

Welcome to the forum, I'm Daisy53 one of the Community Champions on this forum.  I'm sorry to hear that you were diagnosed with grade 3 triple negative breast cancer.  What you are feeling is perfectly normal as getting a cancer diagnosis can be traumatic.

I was diagnosed with grade 3 triple negative just over six years ago during the height of Covid.  After having chemo first, then surgery followed by radiotherapy I made a full recovery.  I had a small local recurrence three years later and had surgery to remove it.  Since then I've been cancer free.

While I won't say chemo is easy it is doable and your medical team will do everything in their power to make sure that you come out of the other side of this.  You will be given medication to overcome any side effects you may have.  Make sure you drink plenty of liquids which will help to counteract any side effects. Make sure to wash out your mouth after every meal with salted water to help prevent mouth sores.  I did that after every meal while I was having chemo and it helped.

Wishing you the best of luck with chemo and hopefully you won't have too many side effects.

Best wishes

Daisy53

Hi Spooky1 

Most breast cancer is not inherited and whilst BRCA1 gene defects are highly linked with TNBC, most TNBC just arrives with no family connections. Mine wasn’t hereditary. You are treading a well worn path with treatment. Do you know yet whether pembrolizumab will be part of your treatment? Whether you are offered it or not depends on whether your tumour has the protein it targets - not all TNBC is the same.

I am getting close to my 5 year survival point, despite having stage 4 TNBC, so it’s not always the horror show you might find by googling. A lot of data is out of date because treatments have improved so much. As Daisy53 says, treatment is doable. I don’t think anyone would welcome having to go through it, but it’s unlikely you will get all the side effects listed on the leaflets, or that you will feel ill all the time. Gastro side effects and fatigue / achiness are pretty common, as is hair loss.

When you know what your drug cocktail is, post again and those who have had the same thing will probably chip in. Wishing you all the best. 

So apparently I will be having pembrolizumab and paclitaxel albumin-bound? 6 months of the chemo, then surgery, then radiotherapy. Also possibly immunotherapy. I get to try a cold cap as they're standard in my trust. 

My consultant was really good. I'm a scientist and he was very straightforward about everything without any sugar coating but seems positive about things. Apparently the aspiration biopsy of my lymph node looks OK too, so that was reassuring. 

Hi Spooky1 Pembrolizumab is an immunotherapy. It’s a PD-1 inhibitor and it works to break down the PD-1 / PD-L1 bind that is stopping your immune system ‘seeing’ the cancer. About 40% of tnbc cancer express PD-L1 and the NHS have been offering this drug for eligible patients since (I think) 2023. NAB-Paclitxel (also known as Abraxane) has the same active ingredient as ordinary paclitaxel, but a different suspension. I think people are less likely to have a reaction to the suspension and it doesn’t need pre-infusions of steroids and antihistamines.

I had pembro with NAB-Paclitaxel in 2023 when they realised I had secondary cancer in my liver. I was one of the first 2 patients in my hospital to be offered it for tnbc. It was an absolute game changer for me, putting metastatic tnbc into a remission that has held so far. I had previously had EC and ordinary paclitaxel when first diagnosed. I found out the cancer had already spread before I completed that treatment. 

Ah, ok, thank you so much for explaining! Really pleased it worked so well for you! 

Not looking forward to starting the chemo as I know it's going to be rough, but at the same time keen to get going cos the sooner I start the sooner it'll end (hopefully!).