PET Scan Result

[tammymarie1971]

Congratulations Julie...We all rejoice with you!!!
Tammy

[StephN]

Hey Julierene -
That news makes my day! Knew you could do it!

Just to let you know how things went for me when I was looking like NED. The scan showed some little spots left in my liver (that had been full of BIG spots). He thought that was likely scar left over.
We decided to do 3 more treatments weekly of the Taxol, navelbine, Herceptin. I was getting the Epo and Neupogen to keep my counts up so was doing ok that way. I tolerated the three more treatments and by then my CA27-29 and CEA were all about normal again. Remember that the drugs will keep working in your body to some extent for months, as the half life expires.

I have remained on 3-weekly Herceptin since that time with Zometa for my bones. There are a number of us on this board who have been diagnosed stage IV and are maintaining for years so far on Herceptin alone or with Zometa or a homone blocker if appropriate.

I am also hormone negative so have nothing else but what I have been getting - and it has WORKED! Like you have grade 3 tumor.

You should be able to qualify for one of the versions of HER2 vaccine trials. I am ready to look at a new version that will take those of us with stable or resolved brain mets and long use of Herceptin. Those two things disqualified me from the trials in the past. I am at University of Washington.

You are a "responder" like many of us - so expect to live a long and happy life.

[julierene]

It feels SO good to be a "RESPONDER"!!! I was really worried about what the tumor location pain was all about. Now I know it was necrosis pain - for sure!

Add me to the list of Herceptin gals! (I'm also p53 gene mutation positive.)

I just had my CA27-29 tested for the first time about a week ago and it was 15.2. I thought at the time that the number should have been higher with active disease. But hey! Maybe the number was low because there isn't much disease left. Why didn't I think that before? I was just focused on the test being useless. LOL! Go figure! I need to work on my positive thinking huh? :P

I sure would love to be around for a long time! My kids are only 2, 5 and 6. I hope I will be around long enough to see them graduate high school - or longer!

One thing is for sure, you gals are great. I have found so much encouraging news here. When I got back from my initial onc visit, I felt like my world was over. With a little bit of luck, I found this site a few days thereafter and it has been something I check in on a LOT. I'll be a regular... :-) It's a great place to communicate with others who are going through similar situations. I am sorry we are all here, but at least we are here together.

When my mother died 4 months after being told she was Stage 4 and only 33 years old, with bone mets, I was terrified to be Stage 4. Now with Herceptin, I feel like I may be around longer than she was. I'm 31 now, so it's only 2 years away! I think that will be pretty easy now that I'm a "responder"...

Lots of Hope, Julie

[karenann]

You deserve to feel happy and joyful. I will tell your story to many and I know, it will fill their spirits with hope.

Hugs,
Karen

[Rozebud]

Julie - this is awesome news. SO excited for you!!