Chemotherapy is the only thing effective on TNBC

This is the first time I've made a comment.  I was Dx with Ca June 09 and I recently finished 8 sessions of chemo, red devil first 4 and taxol last four.  (Stage III aggressive) I was pleased after the first or 2nd dose of the red devil to discover significant shrinkage of the tumor.  (I personally have neglected on examining my breast since the tumor was found).  Two weeks after the final #8 chemo session with taxol, I discovered a large lump (just by seeing it!) in the exact place the other one was.  While in my first 4 treatments with the red devil, the tumor had reduced down to it not being in the same area at all and moved way over and was very small.  This has shocked and disappointed me.  I was examined by my breast surgeon the following day, he felt it was probably cancer.  I am having a dbl/mast scheduled on the 25th of Jan, this month.  I told him I have researched some in the TNBC area and could it be that some chemo medicines are not effective for TNBC, and how is it that he would consider radiation when it hasn't proven to be effective for TNBC.

Hi Latricia,

My cousin did AC/T when she was first diagnosed. AC reduced her tumor from 6 cm to around 3 cm. After the maximum number of rounds of AC, they switched her to T (Taxol) and left her on it for 3 months. There were no scans at all until the end when they found out her tumor was now 7 cm!

She's now on the phase 3 BSI-201 PARP inhibitor trial.
http://clinicaltrials.gov/ct2/show/NCT00938652

She's currently in the non-BSI-201 arm and hoping to switch over to the BSI-201 arm if her tumors progress.

Wow.  I am so glad I got on here.  Thank you so much for your imput all three of you.  Someone else had recently told me that this newly found cancer may not necessarily be triple negative, secondary something....

Here's what I have about chemosensitivity testing.

Problem is that they need to be done on fresh tumor, so requires a surgery or biopsy. Depending on where the tumors are, could be more risk. The top two places are Rational Therapeutics in Long Beach, and an oncologist at UC Irvine whose name escapes me. It is a controversial topic in oncology. I believe the data that they are predictive, however I also don't think they are worth unnecessary surgery. There is the risk that one biopsy will have different chemosensitivity than another tumor site, if they have different mutations.

Here's also a web site that explains it.
http://www.chemosensitivity.com/

Nancy, the chemosensitivity.com site mentions obtaining tumor cells from the blood, but that's not always possible because there aren't always tumor cells floating around in the blood. If there are, you're worse off than if there aren't. I guess that's what they mean when they say, "node negative" because if there are no tumor cells in the blood, then there will be none in the nodes and therefor it's less likely that the tumors have metastasized.

Chemosensitivity.com says that if you have metastatic cancer, then they can get samples from your blood.

I guess what that means is they take blood and you hope that they can't find any cancer cells, but if they can't, then you don't get your test results and they need to go in with a needle to take a biopsy.

If they're going to take a biopsy anyway, they might as well take enough for the test.

I personally believe chemosensitivity testing is a good idea because even though it might not find the therapy that is guaranteed to work on all your metastasis, at least it will rule out those that don't work on the sample. I mean if it doesn't at least work on the sample it probably won't work on the mets either.

Dear Nancy,

where is the evidence in scientific peer-reviewed journals of the efficacy of the work in Greece or Germany?

I may have missed it at the ASCO conference or SABCS but I do not remember seeing any papers presented by either group.

Nancy, until we have more evidence their system works the most important part of your post was your question..."If the head director at MD Anderson states that this lab in Germany was a huge success with the testing, then why is not everyone being told to have this testing?"

now that is a good question....and what is the answer?...and what is the name of "head director of MD Anderson?" and where is the printed reference from the Cleveland Clinic?...

If there was an easy way to find out if certain chemos worked or not, just from blood work, that would be a HUGE development for our community. Terje made an excellent point regarding that. I have no idea if the Greek and/or German labs research/practices are valid or not. Until we can have hard evidence validated by reputable sources that they are, I think it is dangerous to present information about their facilities...

All kinds of folks promise all sorts of things regarding cancer...I have a friend who took his wife to Tijuana because of their supposed "miracle cure." She died recently. The only thing for sure about that exercise was that the clinic took a bunch of their money.

Nancy, please provide more concrete information..I pray the results from these labs withstand scrutiny but until that evidence is presented I am skeptical. I am delighted if your contact's wife was helped but I think our community needs more evidence before such treatment is recommended.

Nancy, please, please do not take my post as anything negative about you personally...I know your heart is with our community and on a personal level you have been very supportive and helpful to many, many here including me and again, I thank you for that. I am just nervous about the information you passed along...and no, Suzanne Somers opinion on this doesn't do it for me, either..

I personally think this information belongs in the Alternative Treatment Support Forum.

all the best,

Steve


Edited by steve - Jan 15 2010 at 8:51pm

For chemo sensitivity testing there is also Mammoprint (which tests for genotype aggressiveness, but provides clues as to what might work best) and Target Now--they test the tumor tissue, and it is covered by insurance more often than not.  It can provide additional info as to the best course of action. 

Dear Steve, tumor sensitivity testing is not "Alternative"; not at all.  It is a medical procedure that will become the standard of care once the political and cost considerations shake out.  It is routinely done at top cancer centers for other types of cancer, lung cancer, for example, and should not be dismissed.

It is critical for forum members to share information that may affect their outcomes; were my chemo failing me, I would want to know about other options out there that would provide further data to help me coordinate my treatment.  I don't believe that ASCO is the final word on these things.  As a bloated and major pharma funded body, it can only factor generalized risk but not absolute risk to the individual, and as an individual patient, who can wait 10 more years for them to decide what is valid and fits their agenda with regard to chemo sensitivity testing?  Chemo sensitivity testing is strenuously opposed by the standardized chemo concerns.  Why?  What are they afraid of? 

It will become the standard of care once we start to make a little noise.  What many people fail to understand is that oncology science is failing triple negative breast cancer.  Tnbc is a stem cell genesis and propagating phenomenon.  If you need chemo, getting the right chemo cocktail is critical for this subgroup--it is all we have.

It is more profitable and comfortably common to throw the chemo spaghetti against the wall and see what "sticks" when it comes to tnbc.  I, for one, cannot understand how we can so easily accept this as the standard of care when it comes to such an aggressive form of bc.  

Carol,

I have not seen anywhere that radiation is effective on TNBC.  Is this just another thing that the doctors are doing due to "protocol" and not really understanding TNBC?