Relationship between Her2+ and brain tumors?

Does anyone know of any definite relationship between Her2+ and brain mets? The statistics of Stage IV women who get brain mets and those of us HER2+ make me wonder...

Love and light,

Lisa

I don't believe there is a proven clinical relationship. The facts are that being her2++ made our disease more aggressive to start with, and herceptin like most treatments does not cross the blood brain barrier, thus our brain is unprotected. Herceptin is increasing our survival thus increasing the odds of brain mets. Another bittersweet part of her2.

You know, I have read and heard this argument, seen the reports stating this possibility, yet I still wonder. It is an 'easy' answer but how true is it?

What does 'surviving longer' mean? I was dx'd with brain mets just 2 1/2 yrs after origianl dx. Didn't receive any Herceptin until AFTER brain mets had been addressed.

I know I am not 'unique'. Just because it MAY be true that some don't develope brain mets until year/s after taking Herceptin, it does not automatically mean Herceptin is the reason.

And it is true that on autopsy of those who have died from their cancer (multiple types) that there are a good percent who do in fact have undiagnosed brain mets. This leaves way too many questions for the 'easy' answer that: "Herceptin is the reason we are living longer, thus developing brain mets." IMO

pattyz

I don't think that anyone meant to say that herceptin is the "reason" for brain mets. As to the connection between her2neu positive breast cancer and brain mets, look, we know that her2neu overexpression is an aggressive feature, and therefore, it stands to reason that someone who is her2neu positive, ALL OTHER THINGS BEING EQUAL, will be more likely to progress to Stage IV, and Stage IV means that mets to the brain are possible too.

The thing is, all other things are NOT equal, and some features may outweigh her2neu (hormone positive, number of nodes, WHERE the tumor was located in the breast, other biological characteristics that none of us have ever heard of yet), and some treatments may outweigh some of THOSE features still (herceptin, hormone therapy, choice of chemos, mastectomy versus lumpectomy when the tumor is near the chest wall or multi-focal, use of radiation in multi-nodal cases etc.)

It seems that the use of herceptin HAS lengthened survival in some women, thus leaving them alive longer. If they were dead, they would not be able to develop brain mets. If they are alive, they can, whether diagnosed or not.

I am sorry you are going through brain mets, or have gone through it. I am glad that you have had herceptin in your arsenal at least for this go-round, and hopefully whatever you are doing now will effectively keep your mets at bay.

It sounds like you and everyone else needs to get used to the notion that brain mets do not mean that the fight is over. It's just like everyone had to get used to the idea that a CANCER diagnosis did not have to mean death. Back when I was a kid, we had those disease of the week movies, and I figured that if you got cancer, you died, period, end of story. Even as a young adult, I think that idea was there planted in my mind. When a woman I worked with was diagnosed with breast cancer at the age of 34, I recall feeling as if it were all over for her. Well, she is still alive today and doing fine four years later. I can remember my reaction to birth control ads which said that women with certain kinds of cancer shouldn't use them, and I was actually thinking to myself, "Why would a woman with cancer ever need BIRTH control...I mean, doesn't she just need to LIVE, let alone have a sex life?" Kinda stupid. Then I got cancer at the age of 36.

It goes without saying that I have a VERY different vision of cancer now, and it is not nearly as bad a vision as it was before I was diagnosed. I was completely unversed in the idea that women can battle this disease and survive long term.

I think there is an analogy there to what is going on in the area of mets and brain mets, in particular. It seems that more and more there are great treatments, and it only takes ONE to knock brain mets into the realm of the winnable fight. Look at what has happened with Hodgkin's disease, as an example: 30 years ago, it was death. Then they started treating it with radiation. My mom's friend was one of the first to be cured of Hodgkin's using radiation treatment. She survived 25 years and then died of heart disease.

Another example - Ewing's Sarcoma. Once a death sentence, now curable. Another: Chronic Myelogenous Leukemia. Once a death sentence (as well as disease of the week movie topic), now curable...with a biological targeted therapy, I might add.

I hope you live a loooooooong time and, what is it they say? Die at 95, shot in bed by a jealous spouse? Or something along those lines....

lauren

My goodness I envy your energy!! Wish I had just what you've got in your fingers )

See, I'm not afraid of dying. Everyone does. Of something or another. But I was READY. All plans made, stuff done, prepaid etc etc. Now...it is anti-climatic. And I had become used to only thinking a few weeks ahead.

Yet, I understand what you said and where you're coming from. Now we know you just a little bit better. And that is nice for us.

Another thing is.....we all are so afraid of METS. But mets is not a short term death sentence, either. Yes, we do die of our mets. But many live long lives as well, until they die from something else. Some with mets even die from something else SOONER than their mets would have taken them. Life. And our attitudes toward it including the end of life....
more hugs,
pattyz

As I like to remember, I could get killed in a car accident tomorrow....but I didn't worry about it tonight.

lol!! we don't 'get it' too well from eachother!

I surely didn't say nor intend to say that 'Herceptin causes brain mets.' Although there was some discussion on that being possible at one time.

I think that is when the idea that 'living longer with Herceptin' became the reason more were being dx'd with brain mets.

Last fall, I really didn't think I would be alive this spring. What a surprize and difficult notion to get used to my being NED in brain and body.

Temodar was my agenda for about four rounds, but I'm doing nothing at the moment to 'keep them away'. Only trying to get used to the idea that I might be able to make some plans over a month away...
hugs,
pattyz

Patty,

I am so happy to hear of your success with temodor. My mom is taking the same thing with whole brain radiation. How long ago were you diagnosed with brain mets? I also wonder if you had any problem with depression. My mom has been so tough mentally about beating this disease until she was diagnosed with brain mets. She is only a couple of weeks past her diagnosis but I am wondering if you have any suggestions of things that helped you that might help keep her spirits up.
Thanks and God bless you!
Shannon

Get her some celexa, it seems to do a very good job.
Good luck, Al