Stage IV IBC TN - What was your initial treatment?

Hi JoJo, I'm so sorry to hear about your friend. I know how scary IBC is. Was she Stage IV de novo?

I'm not Triple Negative, so your friend's chemo drugs will be different than mine, but the initial treatment for IBC is almost always chemo as soon as possible (plus targeted therapy if appropriate). The important thing is to stop it from growing immediately. IBC is extremely aggressive and I couldn't believe how much damage it did to my body in a matter of days. The good (and bad) thing about IBC is that you can often tell if the chemo is working without having to wait for the next scan to confirm during those first few critical weeks/months.

Treatment recommendation after that is going to depend on her specifics. Surgery and radiation might be options after chemo for your friend depending on her circumstances, but they aren't typically part of the treatment when IBC is Stage IV de novo. It's usually just systemic treatment.

The most important thing is don't pay any attention to the statistics for IBC or for TN. I've had a good response to chemo so far, hope your friend does too!

Lori

IBC isn't usually caught by a mammogram because it doesn't grow in a lump like other breast cancers, it grows in sheets or layers. By the time there is any sign of it, it is already at least Stage III and often Stage IV.

Sending her a big hug and best wishes for a good response to treatment.