Hello -

I am starting treatment for TNBC recurrence in a few weeks.  Originally diagnosed in 2019 TNBC, Stage IIIb, with lymph node involvement; had mastectomy, chemo, radiation.  After 9 months of treatment, told NED.  I was “cancer free” for a very short time, it returned on the same side as mastectomy, now on chest wall,  Surgery is not an option.  My doctor started me on oral chemo, Xeloda, I tolerated that pretty well & didn’t lose any hair – but after 6 rounds of that, couldn’t walk or put pressure on my feet so was taken off.  Now recommending a new chemo for TNBC, Trodelvy…side effects are pretty intense.  Has anyone been treated with Trodelvy?  If so, what was your experience?  Also, I’m going to also have cold cap therapy.  Has anyone had experience with that?

This is devastating being on the road again in such a short time…I’m trying to keep my focus and make the right decision.  Thank you all —

That must be so worrying for you to be back on the road again.

Has anyone replied to you yet? I’ve heard about this drug but didn’t think it was available. Fingers crossed that it does the trick for you.


…I was going to do the cold cap thing, just couldn’t face it on the day. Extra stress! The nurse I had said that it wasn’t always effective and I have a good head of hair so I may keep a few strands…for the mo. So if you have a good mop of hair…


Hello Believe 369,

You are having a rough time, and I thought I had it bad. I was interested to hear what you describe as peripheral neuropathy from the waist down. Strictly speaking peripheral really means just hands and feet but I’m with you on it affecting other nerves. My left foot is numb and tingly to mid calf, right foot just the toes and sole but the area around my back passage is also numb and the muscles at the back of my thighs are really weak. My oncologist has no explanation other than to tell me what it isn’t. Reassuring to know I have no bone mets.

I am surprised your doctor has offered Trodelvy as it hasn’t been released yet unless it can be used privately. It sounds so promising too, hence the petition. I’ve just checked the petition out and it 403 signatures away from the required 200,000 to get a debate. So anybody reading this if you haven’t already signed please, please do.  We TNBC girls have so few targeted options. You’ll find it on the home page.

Continue to Believe. All the very best x

PS I did cold cap 14 years ago and let’s just say I haven’t done it again, which speaks for itself.

How are you getting on?



I have used the cold cap for various chemo but I have just started Trodelvy and am starting to lose my hair in spite of using the cold cap so assume it is not going to work which is a pity as I have been so lucky so far and haven’t needed a wig.