Marymath if you have fluid in your inner ear that could be what's giving you headaches as well as the steroid withdrawal. Don't get too scared of the MRI. No need to assume the worst. As you know if there is anything that could suggest a problem a good onc will do a scan even if they do believe there isn't an issue.

I too never got a brain scan from what I remembered and wondered the same thing. Given that my onc has done a lot of research in HER2+ (was one of the oncs in the trails for Herceptin… even mentioned in the book!) I'm OK with no scan. I have a feeling it might be if there is an issue you do get symptoms pretty quickly… not based on any facts though.

Thanks for the update. It does make sense. Sorry about your onc.

Good to know!  Sorry about your onc...I would be lost if I had to lose mine right now!!

thanks, ladies. i am really sad about it - he and I had a great connection. kindred spirits. he even got teary eyed today- which of course made me about to lose it.

anyway, glad to help with the clarification. it was an issue causing me heaps of anxiety lately.

xo

j

Hi everyone.  I'm new here and have been reading your posts.  I've been worried myself over dizziness and wonder if it's the brain.  I think it's the position vertigo though and there is an exercise that I did last night to help with that.  I think it helped a bit as when I had radiation this a.m. I didn't get dizzy.  I finished my chemo & surgery and now am having 32 rads.  My onc told me that Her2 "loves to go to the brain" was exactly how she put it.  She said that the FDA had approved Tykerb only for Stage 4 and that the trials going on are trying to get it approved for the earlier stages.  This same thing was done with Herceptin.  The Herceptin study was cut off early because it helped so many women and I hope to hear the same thing about Tykerb. 

 I'll see my onc in a week & will tell her about the dizziness.  I'm worried about any more radiation as I've had so much since dx. 

 I notice that most everyone has their condition graded but I can't find any info on my path report to do that.  Can anyone tell me how I figure it out? 

Article on BCO -

http://www.breastcancer.org/treatment/targeted_therapies/new_research/20110610d.jsp



WHY ARE NOT ALL HER+++ receiving this combo????



Why did KonaKat not receive this combo? Or several other wonderful/beautiful/full of life women who are now in the arms of the Angels, the same women I laughed with, and cried with, and hoped with, as we encouraged each other on this journey. WHY DIDN'T THEY GET THIS COMBO? And why me? What is so special about me that I live, and they didn't?

Marjie, I am Her2+++(overexpression in almost all tested cells), but my tumor was grade 2.  But I'm definitely not the norm.  I also have IBC, which is rare.

Scuttlers, I feel "survival guilt" too.  The problem isn't that we don't have cures for cancer, the problem is we don't know when to use what cure and on whom.  Right now it's at least partially luck but they're learning.   

Thx Lago.

Fitz33- I'm not sure about the outcome. I read somewhere that those who are both positive (ER and PR), had  better chance to respond to tamoxy, than us.

BUT, almost every thing I read only speaks about ER and not much about PR. I don't really know...

I am going to dig out my path report (yet again!!) and look at my numbers .... I know I am Her2+++, but I'd like to see the numbers for ER/PR.  I really didn't pay any attention to them.

Grade of tumor cells just show how like or unlike the cells are compared to normal cells. Grade 3 having the most distortion. High proliferation rate is associated with higher grades but you can be grade2 and HER2+ and still have a hight poliferation rate do to the HER2+ status.

My understanding is HER2 is on all cells. This is what tells them to grow. The issue for us is we overexpress this gene which causes too much growth (tumor).

I get the impression that if you fit in the range of too much expression then there really isn't too much difference but I would check with your onc.2.2 is considered amplified. My path report considers anything 2 and above as HER2+. I was 3+ I think they stop counting when the get about the 3 range.

If you do ask your onc I would be interested in what she/he has to say about it.

Sweetbean don't stress over this. You may not even need Herceptin. You are just taking it as insurance. Not all HER2+ spread. The problem is they don't know which ones do and which don't. I'm sure if you need it it will do it's job.

I'm only 30% ER+, 5%PR+. Even though it's lower that many others I'm still taking Anastrozole. It's just another gun. It's a good thing you are getting Herceptin even if it's a few months later.

Whenever I've read posts about mets going to the brain in Her2+ women, no one is ever very concerned about it because they all say they have a Cyber Knife I think it's called and it takes care of it.  I haven't seen where they have had mets to other sites so it looks like the docs have got it under control even if it does strike which we hope it doesn't.  I'm not going to worry about it much but with my dizziness lately it crosses my mind. 

I see my onc for my first checkup in another week and am thinking of asking her some questions but for the life of me I can't think of what to ask.  I don't want to know statistics because I don't think anyone can predict that, the recurrence rate seems to have been answered in these posts as two to three yrs. out and you're doing well, I've asked before about eating and was told "everything in moderation" and organic isn't necessary, for each coffee or glass of wine have an extra glass of water, try to walk 20 min. a day.  Is there something I've been missing about asking that's important?  I don't want to worry so much and feel really good except for the dizziness.  Rads aren't bad at all and could be causing it.  Herceptin treatments are okay, just some joint pain afterwards.  A lot of days lately I feel better than I ever have.  Is anyone else like that?  Is it because each day is more precious now?

My pathology report graded me a Grade II/III...I'm not entirely sure what that means? 

And I'm 80% ER+ and 40% PR+.  I gather that this is in my favor for taking Tamox.