sloan kettering-not encouraging

Maria - I am sending you a huge hug.  If your case is "not the norm" then they can NOT say you will not respond to some treatment....they don't know because you don't fit neatly in some little box.

i am so sorry your appoinment was a bummer, but hold on to hope.

YOU ARE NOT A STATISTIC!  You are 100% alive today.  Now we just have to find the right treatment.

Huge Hugs

Deb C

Maria,

I think sometimes care providers tend to think with and use different terms than patients do, and it is hard to match up what they mean with what we mean.

I think you probably have already been over at her2support.org, but if not that is one place where you will see many with mets who are doing rather well over long periods of time.

Hugs,

AlaskaAngel

Hi Maria-new to the site- I was a three year survivor until bc came back in my internal mamm nodes-now after two biopsies and multiple scans done at Sloan, I'm ER/PR neg and Her2+ but the conclusion of my results wasn't obtained quickly nor easily.  After 7 weeks of going back and forth for testing I blew up on my onco nurse to the extent that they were talking abt me getting psychotherapy, yet they could not uderstand that I was in a good place in terms of my dx (as good as can be expected) what bothered me was the poor management of my lab results.  Well, my explosion made them move quickly.  Within one day, I was called back with an appointment for my 2nd biopsy with mediport scheduled five days later.  I demanded the most efficient team to do my biopsy and not some rotating doctor and my slides were read by the best tech.  My results returned within 3 days vs. the 2 weeks it took for the first biop.  I guess my point is that yes sloan is a great place, however, when you take your own healthcare into your hands and demand the best from an institution which is considered to be one of the best, you will get better results.  Saying "that's not acceptable" going for a second opinion, and taking charge make a world of difference.

Maria,



Are they rechecking all the markers on the abdominal nodes, the ER, PR, HER2 and maybe VEGF too?



Of course, Tykerb ( Lapatinib) which is effective against both HER2 and contra-EGFR HER1.



Hopefully Fox Chase will be able to provide some molecular insight and so guide your doctors choice of treatment more individually.



Sorry it's so stressful for you. Sometimes it pours when it rains, making those puddle jumps more like a lunge.



Tender

Hi Maria! How are you today?



Thank you for your complement. I enjoy reading and analyzing medical writings pertaining to breast cancer. I am by no means an expert on this, but with some medical background, it's truly enjoyable and hopefully helpful.



Yes Tykerb is Lapatinib. There's a lot of excitement amongst the real experts, the researchers and clinicians about this drug in both the HER + and - states, and strange enough, even in the ER+ state.



Scientists suspect some hardy ER+ tumor cells that use estrogen to fuel growth change their growth pathway from estrogen to HER2 when flooded with anti-estrogens. So there may be a continuum with loss of estrogen receptor properties and tendency towards acquiring bc cells with HER properties. A small study of recurrent ER+ HER- cancers found a 26% change to HER+ state. Go figure. So Lapatinib is also being looked at in the lab with ER+ tumors, to see if it's addition dampens down the crosstalk with HER genes and proteins.



Pertinent to your situation, Lapatinib is helpful in suppressing HER + breast cancer cells and remarkably, in an exciting paper shown at the 2007 San Antonio BC conference, also suppressing HER+ STEM cells. These stem cells can be thought of as cancer renewal cells. So it was a big deal to find that Tykerb (Lapatinib) had a suppression effect on these renewal cells, as while lapatinib is effective against HER2 on its own, it's especially good in a patient who didn't respond as upfront to Herceptin if it can dampen down stem cells. Heres a link you can read on this should you wish:

http://www.webmd.com/breast-cancer/news/20071217/tykerb-targets-cancer-stem-cells



More and more, pathologists and researchers are looking at our breast tissue molecularly. That's why I asked if your abdominal tumor was possibly being checked for the newer markers and small molecules: not just ER/PR/HER but VEGF, which stands for vascular endothelial growth factor protein. Avastin® (bevacizumab) neutralizes VEGF, thus inhibiting a process known as angiogenesis in which the tumor secretes proteins to attract the growth of new blood vessels to deliver oxygen and nutrients to the tumor. You probably have heard of late about Avastin use in metastatic breast cancer.



Tykerb, which is given orally, targets both HER2 and the epidermal growth factor receptor (EGFR), also called HER1. There are I believe five differing HER states which just now are being better understood. So it was very exciting to find Tykerb, as it hinders a breast cancer growth dependent process, and of late (12/2007) has shown to influence HER+ cancer stem cells. All this in one drug. As you said, your doctor is talking of using Tykerb with Xeloda; this combination has been shown to do very well in delaying breast cancer progression.



I'm sure you're looking forward to your discussions with your oncologists. I'm hopeful they will soon have the unstained slide tests worked out, and ready for review.



I wish you so very well, Maria. You have two excellent cancer centers on board, and sometimes an unusual medical situation brings in the entire cancer team to discuss, ponder and help direct your care.



Hope springs eternal: don't ever give up, especially with these good centers. If one doctor just isn't cutting it and is too gloomy, please speak up and ask for someone willing to work with your situation in an assertive, upbeat manner.



As Flalady signs (just love that lady), living in hope!

Tender

Maria,

Just wanted to join in in wishing you well. I am praying for you!!!

Hugs and prayers,

Candie