View Full Version : hot off the press--targeted therapy in IBC review article

05-25-2010, 09:06 AM

Midwest Alice
05-25-2010, 04:54 PM
Lani thanks how do I open this, Do I have to sign up or something?

Ellie F
05-26-2010, 04:12 AM
I am having difficulty also. it says 'session cookie error'
Thanks Ellie

05-26-2010, 08:55 AM
I am terrible with links

Will try again

Midwest Alice
05-26-2010, 06:35 PM
Thanks Lani,
I am NED now.. last scan Oct. In the last year I have had 3 onc tell me they will not give me tykerb. I did get my one onc to allow me to stay on Herceptin for 5 years.
My onc said if it comes back i will never be NED again.

My tumor block is still at a local hospital. Did they routenly check for this egfr 2 years ago? Can I have it retested for EGFR?

Ellie F
05-27-2010, 02:45 AM
Hi Alice
I also cannot have tykerb but for bean counter reasons!!
I can't believe that your onc said if it came back you would never be NED again. There are women on this board that have done this and also women at the breast clinic I go to!
Love and positive thoughts

05-28-2010, 12:12 AM
Eliie, are you referring to people with IBC or to people with her2+ breast cancer. IBC may be her2+, but it has a behavior all its own.

I don't really know how many (or if any) of those who post on this board who were Stage IV but are now NED have IBC.

05-28-2010, 12:14 AM
Midwest Alice--EGFR is not routinely looked for (in fact it almost never is in breast cancer, except for in clinical trials)--they are starting to look for it in Triple negatives as it may be a marker for basal breast cancer (a subtype of TN with worse prognosis) and may even being started to be targeted in TN breast cancer.
What I couldn't tell in this article is whether EGFR was positive mainly in the her2-IBCs or also in her2+ IBCs.

07-15-2010, 08:10 AM
Hi Alice, I'm confused. Why won't they give you Tykerb??

Midwest Alice
07-15-2010, 03:00 PM
Leslie, They have many reasons for not giving me Tykerb

onc 1: it will make you sick, bad for you to take if you don't need it, more along that line.
onc 2: There is not any research to say that Tykerb will prolong NED or prevent it from returning after successful treatment with Herceptin. ALSO there is not research to say that an extended time on Herceptin past 2 years Will give you more protection. My feeling is there isn't any research to say staying on Herceptin for 5-10 years Won't give me more protection.

onc 3: My locial onc.. who I love... said.. I go along with the MDAnderson and UI medical school oncs. But... I will keep you on Herceptin because why change something that is working.

I guess we don't know what will work. I am so glad to get on here and learn about all the new research and trials. We just have to stay strong till they come up with the next treatment or a cure.

Love your new picture, Alice

07-15-2010, 03:32 PM
Hi Alice, Good to hear from you! I actually have to post my most recent picture sometime! That one is a 'wig' picture with my sister (as if you couldn't tell we were sisters!) She's been my rock through this. You've got me worried now. My onc took me off all meds as of June 10th. I'm NED right now, but every day that goes by off meds makes me worry. I'm such a high risk case. She has me coming back to her every 4 months. It still feels like forever in between. I want to be off drugs but I don't at the same time. What do you think? I never was able to work out coordination of oncs between MDA and MSKCC. They each want me to choose one or the other and since I started at MSKCC I don't have a local onc. If you were me would you push for another year of Herceptin? It didn't really work for me visibly (didn't shrink the tumor) but she said there was still belief that it could be working on microscopic cells. I'm just not as knowledgeable as you are about it all. It still really freaks me out.

Midwest Alice
07-15-2010, 06:37 PM
Hey Leslie, I think it is a real plus you had Tykerb and Herceptin. I think the way it works for Herceptin longer than 1 year is if someone is stage 4 from the get go. They think.. thought ... I was. The spots from my spine are gone... so it was ..or a false positive...we will never know.

Sounds like they are going to keep a close watch on you. If I were you I would want PET every 6 months or so for the first few years. I think they will do that. If something pops up then you hit it again.

Also .. they don't know if 2 years of Herceptin is better than 1 year. There is a study on this very thing but the results have not been published yet.
There is a blood test for tumor markers. I would ask to have that test done now for a base line. Then have it done ever so often to check for changes. Chelee was just talking about this test today. Its 29/27 or something like that.

Midwest Alice
07-16-2010, 09:09 AM
Leslie I didn't answer your question. I would ask to stay on Herceptin for another year. I feel it will not hurt you and it may help.