sloan kettering-not encouraging

jerseymaria

sloan kettering-not encouraging

jerseymaria

today i had evaluation at sloan kettering after positive biopsy of nodes in abdomen.  could not be conclusive until after my slides are examined.  however doc did say yes this was an unusual case (that would be me) very atypical for breast mets. did say i'm now stage 4.  when i asked how unusual it was for herceptin to fail she said of course it happens and when i pressed the discussion she basically said that if her2+++ metasisizes during treatment this generally indicates an unfavorable prognosis. so there i am stunned and feeling doomed right about now.  so i guess she also thinks some possibility of being another cancer and won't know for sure till they review slides.  also said at this time i'm not eligible for any of the studies they're currently doing but of course that changes all the time.  i put in a request for "move a little faster research dept". tues is fox chase in phily.  i just don't feel any optimism about my future at all.  i'm sick of being a statistic.

thanks for listening.   maria

bluesky

maria-i'm sorry to hear that you are going thru this. this doctor should not be saying this, she is not god!! i know it's hard not to despair, but they don't know yet what it is? there are so many types of chemo to treat more advanced cases, hang in there and push and make sure you get the best possible drugs out there. don't give up, it's shocking and very early, you just found this out, you will feel better in a few days and once you know exactly what's going on and what the planned treatments are. feel better, take care and let us know what happens.

AlaskaDeb

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

apium

Maria, I'm so sorry.  I've read other stories here where their cancer spread during treatment and they are doing fine.  Maybe they will come and share their story.  I hope you can feel my big warm hug!

AlaskaAngel

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

TenderIsOurMight

I keep thinking of your post, and how discouraging it is to hear non-encouraging news from your consultant. I'm a firm believer in patient's getting options, unless clearly there are none, which from what I read is not the situation you fall into.



Of course the first step is indeed to obtain the diagnosis on the abdominal nodes. If the nodes are breast cancer and HER+(of course adding the caveat that if breast cancer the HER2 testing be extremely diligently done on the abdominal nodes, and always remember to, serum HER2 values can be drawn whenever an oncologist wonders about HER disease presence), then Dr. Geyer's early work comes to mind, as his initial study with lapatinib was for patients whose disease had progressed on trastuzumab, and in that setting lapatinib was clearly beneficial.



Geyer CE et al. Lapatinib plus capecitabine for HER2-positive advanced breast cancer. N Engl J Med 2006;355(26):2733-43



This has been more recently confirmed in a Phase III European trial whose reference follows:



Breast Cancer Res Treat. 2008 Jan 11



"A phase III randomized comparison of lapatinib plus capecitabine versus capecitabine alone in women with advanced breast cancer that has progressed on trastuzumab: updated efficacy and biomarker analyses" Geyer, Cameron D, et all.



To do a search for clinical trials in HER2+ disease (are they checking the nodes for VEGF+ findings also?) then you may wish to search: clinicaltrials.gov, using breast cancer, HER+ (may have to spell our human epidermal growth receptor) and see what comes up.



Fox Chase oncologists may have an appropriate trial and advice too.



Thinking of you,

Tender

moni3

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.

Anonymous

Maria, this is certainly upsetting news. So you're in the midst of Herceptin tx? Hopefully, you'll know more soon. I ditto the comments here that no one really knows what tx will or won't help someone.... I really don't like gloom and doom predictions. How is that supposed to be encouraging? I mean, come on!

I'm thinking of you and praying!

God Bless,

Miss S

jerseymaria

miss s, no i finished herceptin in jan.  this was found in follow up pet scan and subsequent biopsy. even though all pathology says bc recurrance, the docs don't seem convinced so thats the reason for path being looked at by other institutions.  sloan doc was not specifically pesimistic.  i kind of pushed the issue (i'm such a need to know person).  when i kept asking why herceptin works in such a high percentage of patients, why not me.  and why should i expect that tykerb and xeloda would be any better. that's when she said that generally with her2+++ if there is a failure during or shortly after treatment that indicates a less favorable prognosis.

the other thing is that i was in the medical field for many years and am quite familiar with "doctor speak".  i'm trying hard not to be so very depressed but this was also a horrendous week with family issues (had to throw my adult daughter out) so my heart is broken for many reasons.  i'm praying alot and hoping that helps soon.

Anonymous

Maria,

I'm so sorry you're having such a rough go of it with health and family. It seems like we're just bombarded from all sides sometimes. Keep praying and please know that we're praying for you, as well.

Big hugs from Virginia.

Miss S

TenderIsOurMight

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

jerseymaria

tender...you are so knowledgable i'm in awe.  i've seen vegf mentioned on the threads but i have no idea what it is...never seen it mentioned in anything i've read so far.  can you enlighten me?  is tykerb the same as lapatinib...i thought it was.  onc. said tykerb and xeloda if breast.  my onc told me that if hormone receptors were positive then they can change to negative but if originally neg. as mine were then they don't change to positive.  the hosp. that did the biopsy path said they couldn't do her2 testing on the sample.  however the onc at sloan said if they had unstained slides they could. what on earth does it mean if her2 status changed...how can that be. so i called  yesterday and they have unstained slides.  picking them up mon. to bring to fox chase tues.

when they're done with them i'll send to sloan.  i'm really glad that 2 separate major cancer institutes are going to evaluate my slides to see if local hosp was correct but more importantly to find out once and for all wtf is going on in my belly.  i'm sick of being an unusual case in everything that goes on with me medically.  why can't i be ordinary lol.  thanks so much for your help and the answers i know you'll send my way.  hugs maria

TenderIsOurMight

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

LittleFlower

Maria,

Just chiming in to say i'm so sorry you're dealing with this! I hope you really start getting some answers and the appropriate treatment soon.  I pray you have a fantastic response to your future treatments............

LittleFlower

candie1971

Maria,

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

Hugs and prayers,

Candie