Triple Negative

KCM

I am new to this board.  Does anyone know where the top treatment facility is for triple negative?  Is there a place that specializes in this?  Any experts?

Thx.... 

FloridaLady

KCM,

Triple neg has pretty standard treatment through out the country.  The key is finding a clinic that also uses drug's like Avastin outside of trials.  A doctor who studies TN is Dr Lisa Carry at Univ NC. Again if you are recently diagnose, and in the early stages of bc.  Treatment and stress is high, it maybe best to stay close to home.  Again get a 2nd opinion in your area.  You may want to note what state your in, and some of the ladies who are near by can let you know where they are going, and what treatment they are receiving.  Your staging and nodes status will control your treatment options. 

Flalady

KCM

I'm in Missouri.  I am trip neg stage III spread to 5 nodes.  I had all nodes removed, AC plus taxotere and radiation.  Now I'm in wait and see mode.  I just want to make sure I have done everything possible to try to stop reoccurence.  I have struggled because I don't know any trip neg people and have felt pretty isolated. Any advice is appreciated.

LisaSDCA

KCM - it sounds like you had good, kick-cancer-butt therapy.

Stick around here and you will no longer feel at all isolated.  There are many of us Triple Negs to welcome you.

Lisa

FloridaLady

kcm,

Lisa is right...that pretty much top of the line treatment.  Have you seen the thread "where are all the tri-negs"?  A lot of ladies go into detail on what their treatment was.  This may help you to understand how other have been treated.  Hang in there...you are not in the "holding pattern" waiting for those dreaded followup scans.  Please take time to celebrate that you made it through treatment and very well be cancer free at this moment.

Flalady

KCM

Thanks.  Look forward to sharing info........Question....my last radiation treatment was in 02/08....I still have my port and my doctor recommends keeping it for " a while", do most people keep these? and how long is the norm?  

jason222

Hi Flalady,

You mention about Avastin, do you think it's important to get Avastin as part of the first line treatment for early triple negative BC?

Any resources that you can point me to on Avastin? Need more information to convince my oncologist to include it in outside of trials if there is a good possibility that it may help.

lauren4paul

Hi i just finished treatment Tac 6  (taxotere/adriamycin/cytoxan) i had a bi-lateral mast one node out of 19 was positive / what are the test that the dr will order when i can not get a mamo anymore did not get recontruction will do that later. I also am glad i found this site i have not been able to talk to any other woman with tri-neg bc. when the surgion disected my left breast she found dcis that was hormone recepter positive so my oncologist said he may start me on tamoxifen.

FloridaLady

KCM,

I would leave the port another six months.  You will have regular blood work for the next year.  It just make's thing easier.

Flalady

FloridaLady

Jason,

It's hard to find Avastin with first line of treatment, but if you look at any of us ladies who have mets, probably 80% of us are using Avastin if we have a clinic who has access to it.  There are ladies on this site that are welling to do Phase II/III placebo trials to get the opportunity to use this drug.  For info about trials on Avastin, try Clinictrials.gov and they have a section for info on trials "completed".  Also just search "Avastin and Triple Negative" this should bring you to trials results.  I spoke of Avastin to KCM because if she had not started treatment. try and pick a clinic who could give this to her later  date if need be.  My clinic gave it to me 1 1/2 before it was approved. 

Flalady