Re: "More than 20 lesions" - MRI report
 

Dear Penny,

I'm so sorry! What a blow!

To what everyone else has said, let me add that a woman in my in-person group had extensive liver involvement and is doing well on TDM-1. We all thought she was done, but she's not.

Go ahead and give it a try. We're rooting for you.

Re: "More than 20 lesions" - MRI report
 

Penny,

If you don't try TDM1 you'll never know if its your unicorn. Give it a whirl.

I think its okay to whine really. 20 liver mets, blah! And you worked so hard to eradicate them.

Re: "More than 20 lesions" - MRI report
 

"Expect Miracles"
Now that sounds like my friend, Penny!
You go girl!

I can almost hear those met screaming from here!!!
Remember...rest easy, but lean hard...He's got you...
Denise

Re: "More than 20 lesions" - MRI report
 

Penny, I'm so sorry to hear the news. I remember how upset I was, after having a liver resection, to have cancer grow back. I mean, I cut out half my liver!! All that pain and suffering and even going septic, all those articles about oligomets and living 10 years cancer-free - and I didn't even get a year without cancer. It's hard to face all this failure when you are doing everything in your power to help yourself but sometimes that's the way it works.

But, TDM1 is different than herceptin, and here is the way it was explained to me, but ask your doctor, and take it for what it's worth: Herceptin gets to a tumor and targets the HER2 protein, but not the HER3 or 4, which is why it only works for about 20% of us. We are overexpressing more than just HER2. TDM1 takes a specific chemo and molecularly binds to it, and hand-delivers it directly to the tumor. This is a chemo we wouldn't be able to tolerate if it was just pumped into us, it's so strong, but because it binds with the TDM1, we can handle it. And, the herceptin part also targets other HER2 proteins. SO it is NOT the same thing. That is why it is working on women who have progressed on herceptin. I mean, you can't get it until you have had failure with a taxane and herceptin and it still works for many of those woman, right?

It doesn't work on all of them, but it works on some. So I can't think of any reason not to try it. It will be my next chemo and had I not gotten regression with Gemzar, I'd probably be starting it next week.

I'm incredibly impressed that you have been able to continue to work. There is no chance that I could have held down a job this past year. I gave mine up nearly a year ago - it was a terrible decision to have to make but I was only working half time and I knew I couldn't go back to full time. I was right. So now I'm on disability which isn't much money but helps. I also spend almost nothing if that helps you. I used to be buzzing around, shopping, buying food, spending money and now I don't leave the house much so a lot of my expenses have gone. Maybe you didn't do that but not spending money helped us stay within our budget.

The fact that you have worked going through all of what you have is amazing and shows what a strong woman you are. And, your fight isn't over yet - get on TDM1 and get yourself NED, is what I say! :)