IBC Clinical Trials

ByeByeIBC

Has anyone participated in a clinical trial for IBC? I am strongly considering starting the one at Dana-Farber institue next week and looking to see if anyone has any first hand experience.

purple_koala

I just started a clinical trial for HER2 positive stage 3 IBC at Dana Farber. My oncologist is Beth Overmoyer.

ByeByeIBC

Hi Purple_koal, that's the same one I'm doing!! I will be there this Monday (and most mondays). I have taxol dose #6 this Monday. Are you doing 16 does of Taxol, loading doses of Herceptin and Perjeta, and weekly Herceptin until surgery and then every 3rd week after? (or something like that, lol)

I've had very few side effects. Acne rash, steroid flush for a couple days after, lots of hair thinning/shedding, fatigue, and some diarrhea that I've figure out how to control. Other than that I'm feeling good!

Cravingicecream

PurpleKoal, bye bye ibc, I have been in that trial too. I just completed week 14; started in January. My surgery is coming up and I am hoping the next two treatments wipe out the mess.

I can still see some red in breast, about the size of a dime, which is impressive to me considering how it showed up. My breast pretty much swelled overnight and the entire breast was red within two days and an entire cup size larger. A dime sized amount now is pretty amazing. I was told it might not fully disappear, even if the cancer is dead. The cells can just get stuck there because cancer messes up the removal system too. Still, I was enjoying the visual confirmation of it disappearing

I have had a few side effects, but now I am starting to have real fatigue. I have been loading in the iron to try to combat potential anemia, as I have noticed my cells dropping now that I am close to the end of phase I as I call it. I, however, am still at work and will be until surgery. I have become a bit forgetful, but not enough to have significant problems. I can't eat dairy without a big D event, consequently, I crave ice cream. A small price to pay if it means I survive. My child is 4. I hang out on Mondays too!

ByeByeIBC

Yay, someone else! I will be there on Tuesday afternoon this week, and Tuesday again next week, I'd love to try and meet you both at some point! Are you guys in the IBC support groups on Facebook?

I'm excited to hear that you haven't had many side effects! How did your hair do? I've probably lost about 75% of it, currently cut short to about an inch long just so I can handle the shedding. Didn't want to shave until I absolutely had to as keeping up shaving sounds like a pain! I did get a wig this weekend and several hats, I feel funny going out in public with my hair crazy. My terrible acne is really awful looking too. If it was just the hair that would be fine I think but combined with the acne rash I look ill.

That's interesting about your inflammation going away. They actually took a skin punch biopsy before I started in a very red area, and it came back negative! So I think our skin can be inflamed without any actual cancer in that exact spot. This is really a nutty disease!

Are you doing your surgery at DFCI? Are you local? I'm in MD so fly up each week. Total pain but it's worth it to be in the hands of experts! Trying to decide if I'll do surgery up there too or not.