Herceptin/DM1 Trial folks - please check in

doh2pa · 10-20-2008, 10:53 AM

Hi All,

I am on deck to try to Herceptin DM1 trial. I'm scared and excited at the same time.

Can those of you who are on, please check in and let me know how long you've been on, what the side effects are like and how you are doing? I know Irene in Tampa is having a great response to her liver mets (she's my inspiration) but would love to hear from everyone, even those for whom it did not work so well.

Thanks!

chrisy · 10-20-2008, 01:05 PM

I've been on it since February. At the time, I had just had the tykerb/avastin trial fail after 8 months of "stable". I had to wait several weeks for the DM1 trial to open up at UCSF and in the interim I was "naked" - no treatment - and had more progression (numerous spots lighting up) in my liver.

My first treatment was a long day - they watch you for a long time after infusion. I had a fever and headache that night which dissapated over the next few days. I also had acute pain in my liver a couple days post infusion, which went away after a few hours. Freaked me out, but I chose to believe that was screaming dying cancer cells.

Turns out, it was! - my first scan showed most of the new tiny areas of enhanced SUV were gone, and reduction in size of the other lesions.

Since then, the drug has continued to shrink the lesions and for the past 2-3 scans although a couple are still visible (but less well visualized) on the CT scan, they do not light up on the PET. So I choose to believe this is necrosis.

I've had a lot of liver toxicity on this treatment - most people the drug is metabolized after a week or two but I've consistently had elevated liver function tests. Enough to get put on the 28 day dose instead of 21 days. At one point it even threatened my continuing the trial but I raised holy hell and my doctor got me a special waiver to continue. As an "outlier", I think Genentech wants to see what is going on (and it's working!)

All that said, I think this is a great drug - it has worked very well for me so far and is very tolerable.

Go for it!

IRENE FROM TAMPA · 10-20-2008, 02:00 PM

Just to let you know - I not only had about 5-6 tumors in the liver, but two in my neck area, about 5 in my spine, which I had never had before.

I know that the ones in my neck I can no longer feel and the PT scan did not light up any of the others.

Good luck to you Donna - this is a wonderful combo

Barbara H. · 10-20-2008, 04:11 PM

I have been on it since a year ago this past September. It continues to work for me and is very tolerable. It does have the side effect of elevated liver enzymes and my red blood counts are somewhat low. When my liver enzymes are too high I have to skip treatment. I am on the stage 1 trial and receive it every week. My dose is therefore higher than the three week trial. I have had some inflammation in my lungs which could be a result of the chemo. Six weeks ago it was stable and I was able to skip surgery. I have a CT and bone scan tomorrow and am crossing my fingers that it will still be stable. I do not want to have surgery.

This is a very tolerable drug and I barely know that I am on anything. I have had recurrent nosebleeds that are annoying.

Good luck with this trial.

Barbara H.

doh2pa · 10-24-2008, 08:35 AM

Thank you ladies! You give me great encouragement. I have an appointment next week to begin the trial. I'm keeping my fingers, toes crossed, and praying to whomever will listen. Thanks for blazing the trail, you brave warrior women!