Long term prognosis with mets

[Dalye]

Hello All;
I came across this website by accident about six months ago, and I'm so glad I found it. As I read the stories and emails from you telling your stories and sharing you support with one another is beautiful. You are all my heroes!!!!!! My best friend/my sister was diagnosed 9/03 with HER 2/neu +++, she went through chemo & radiation (dose dense) and was well on her way to recovery. June of 2005 she developed bone mets. She was then put on Herceptin and has been doing well. As a follow-up she went to a onc/specialist who basically told her people with advanced bc (mets) have approx. 5 years. I have read many stories on this website from people who have battle mets for more than 5 years. I would like to know your thoughts and hear from people who have reached (and exceeded 5 yrs) My sister is new to this website and I would like her to read for herself that the battle is far from over. Thank you, Eileen

Hi Dalye,

I got bc back in 1999 and went through chemo. and a bilateral mast. Two years ago after a petscan it showed it had spread to 2 of my ribs, I was put on Femera and that worked for along time. This past Nov. it was found on my collarbone and I am now getting shots clled Faslodex and I am also getting an infusion once a month called Zomenta. My doc. has told me many times that there is still alot of things out there that we can do. You just have to keep that thought and stay positive. I get a magazine called CURE and it always has some very usefull infro. I would think that her doc. would have copies. Stay postive.

[Sandy H]

I will have reached 5 years in March and doing well with only skin mets that keep popping up. I have IBC (inflammatory and Her2 pos. ER/PR neg.) We will see how much longer I have. There are plenty on this board and I am sure you will be hearing from them. hugs, Sandy

[Lisa]

Statistics are simply numbers. They are not you and they are not me. Like any other chronic disease, there really is no sure number. Please tell your sister from me to forget the statistics, stay on top of the latest developments, have a good doc to partner with and be aware of her body and its changes.

And of course, live for today with as much love as possible.

Love and light,

Lisa

[StephN]

Most of us on this web site will tell you that their onclolgists do not like to state statistics as they are outdated faster than last year's shoe styles. They can say that with such and such drugs in a given trial the numbers were thus and so, but this is from a trial and never translates directly into the genreal use population.
We write our own new stats for each drug and combo. We try to be the trailblazers and defy odds because we want to live and do have reasons to live.

I am in my sixth year since diagnosis of StageIIIa and fourth with mets (been off chemo now for over 3.5 years - had complete response). I am doing quite well and maintain on Herceptin and Zometa. I can't do quite as much as before, but by no means sit on the couch all day!

You can brave this thing out too!

[Lolly]

As Steph says, "old news/old stats" indeed! I'm into my 7th year since initial diagnosis. Have been Stage 4 for five years now, going into my sixth year and going strong with great quality of life. Maintenance Herceptin weekly or 3 weekly, with chemo added as needed for an extra "kick" to keep the cancer contained and manageable. My oncologist says "It's an open book" as far as Her2+ that's remains responsive to Herceptin and chemo. AND there are new drugs in trial right now that will be coming into clinical use in the next few years that are showing great promise. There is every reason to be hopeful.

<3 Lolly