FAQS: Triple Negative Breast Cancer

Thanks for addressing this topic, PJ.  I especially appreciated learning about some of the new treatments available for triple negative tumors.

One point that I think is sometime overlooked is that while Herceptin helps many women with Her2 positive tumors, it doesn't help them all.  Some tumors don't respond to it, and some women can't take Herceptin because of health issues like heart problems.  Herceptin aside, Her2 negative tumors are generally less aggressive than Her2 positive ones.

The test for Her2 status was just starting to be done in 1998 when I was diagnosed.  I had to specifically ask for it, and I was pleased when it came back positive because I thought I would be able to have the new "miracle drug" Herceptin I had been reading about.  My doctor looked at me with a strange expression on his face and explained that Her2 positive was not a good tumor characteristic to hope for because those tumors are more likely to spread.

Thank you for the information on the TNBC.  I was diagnosed with TNBC in August 2009.  I've gotten bilateral mastectomy (my decision even though the cancer was only found on one side).  Mine was node-negative; it was considered to be at stage II A. 

Up until meeting with the oncologist, I was very upbeat (as upbeat as one can get when was told that one has the big "C") about getting all the treatments.  Then I met with the oncologist and learned what the Triple Negative meant.  I felt very scared and even more devastated.  My encologist is very straight-forward with the information and did not mince words.  My understanding of this is I have a tougher battle to fight than other women who have "postives". 

I've done 2 of my AC chemo treatments and 2 more to go.  My regimen was every other week, plus 10 day injections of Neupogen in between treatments.

The first treatment was pretty bad for me.  I got nausea & vomitting and flu-like symptoms for 4 days.  Then the nausea & vomitting stopped, but I was still pretty sluggish for 2 more days.  After that, the energy level increased more and more each day.  Appetite was not good at all because of the metalic taste.  I had to make myself eat and drank lots of Ensure.  I also took an herb called Astragalus and it was helping to keep the energy up. 

After the 1st treatment, my blood count was so low, I had to get a blood transfusion and delay the 2nd treatment by a week. 

The second chemo treatment was better.  I was given a drug called EMEND and this helped with the nausea and vomitting.  I still felt like I had the flu for 4 days, but at least I could keep food down.  The downside of EMEND (to me) was I had to eat something (even just a bite or two) every hour, otherwise I would get upset stomach. 

I was told I have Taxol treatments too after the AC, but can't remember how many of those I will need.

I can't wait to get done with chemo.  Time seems to be moving very slowly for me though.

Thanks again for the great info.  I got really depressed about the Triple Negative and told my encologist that I read lots of stuff about this topic online and still felt helpless.  My encologist said I need to find better sites to read.  I think I found it.  Your site has given me more hope about the upcoming treatments that will be available to help women like me who not only has DCIS, but got the Triple Negative too.

Thank you.