Triple Negative

Hi, Umater.  Sorry to hear of your recent diagnosis with TNBC.  It sounds like you are doing all the right things and have a good attitude, which isn't always easy.

I was first diagnosed with TNBC in 2002 and had a lumpectomy, CMF chemo for 6 months and radiation.  I was rediagnosed with TNBC in the same breast in Feb. of this year and this time I had dose dense AC + T plus a bi-lateral mastectomy,  After my original diagnosis in 2002 I was pretty much able to reclaim my normal life, although it did take about 7-8 months to get there once radiation was over.  This time I'm almost 10 years older and the chemo was much harder (I've still got neuropathy about 3 months after the end of chemo) but I'm still hoping to get back to "normal."  Of course my body is never going to look the same but still, I feel I have been very lucky.

Having had BC, there will of course always be some anxiety but don't forget that once those of us with TNBC reach 3-5 years out from treatment, our risk for recurrence lowers to the same risk as for those who were hormone positive..  I get some exercise and try to eat decently but I don't go crazy with macrobiotic diets or anything. Just be sure to keep to your follow-up schedule with your oncologist and surgeon and to be aware of what your body is telling you.  I think it's really the best indicator when things go wrong.  Even though I didn't have a lump this time, I went to see my surgeon knowing that things just didn't feel right.  You have found an wonderful site here for trading concerns and gaining great information.  Best of luck to you.

Umater,

I was first diagnosed triple neg, had neoadjuvant chemo (TAC x 6), then a mastectomy followed by radiation.  The chemotherapy shrunk my tumor and made it much softer but did not eradicate it and when my surgery was performed I still had two nodes positive for cancer also. They removed the entire tumor with very good margins and 16 lymph nodes.   My tumor was retested and they found low levels of estrogen receptors (5-10%.)  I discovered that because I did not get a complete response to chemo my chances for recurrence were greater than someone who had had a complete response to chemo.  They performed an analysis on the remaining tumor using a calculator developed by MD Anderson, and rated my "residual cancer burden" as a 3.2 - which has a high rate of recurrence, perhaps as high as 50% depending on who you ask.  So..I decided to go into a clinical trial geared toward patients in my situation.  The trial offers additional chemo in the hopes (there is no proof) that it will help prevent recurrence. There are at least 5 such trials going on that I know of right now - the one I am in is a trial sponsored by Sarah Cannon using eribulin, a new chemo drug.  Here is a link to a page that lists the trial (BRE186)- also on this page are two others - "Ixabepilone after neoadjuvant chemo for HER- disease" and "Avastin, Chemo, Diet & Exercise after Neoadjuvant Treatment." The last trial is randomized - half of the participants only receive diet or diet/exercise - no chemo. There is another trial sponsored by Brown University with locations in Rhode Island and New Mexico - and there is another one only for triple negatives in North Carolina (I cannot remember right now where but I have the actual paperwork at home - it is out of Indiana - something like the Hoosier group. I no longer qualified for it due to the possible 10% ER receptors.  

https://www.breastcancertrials.org/bct_nation/browse_trials.seam?categoryString=TREATMENT_CHEMOTHERAPY&pageRecord=0&cid=24001

If you decide this is something you are interested in, talk to your doctor and also look carefully at the requirements to get into the trials - some of them have time limits, some are even done prior to radiation I think.  The eribulin trial has a time limit after surgery and it can start during radiation. I am doing well so far but have only had one infusion.  It is much better than the TAC.  Wishing you all the best, Christina 

I'm glad to be of help and if for some reason you end up on this trial, please don't hesitate to PM me with questions about how I've felt during it, etc. I ended up going out of state for a third opinion and I am glad I did it. UNC at Chapel Hill (where I went for 3rd opinion), Sloan Kettering, MD Anderson, Mayo - and I'm sure others will chime in with their favorites - are all good.

Hi umater,

For some reason I've been unable to copy and paste the necessary links but I'll type them below and hope you are able to search and find the necessary information.

This study concerns LMWH and its role in reducing tissue factor whch is prevalent in invasive cancers:   

www2.hull.ac.uk/science/biological_sciences/news_and_events/news/ettelaie_new_study.aspx

This research concerns the benefits of taking low dose aspirin:

www.bbc.co.uk/news/health-11930988

If you can't get the info, let me know and I'll try pasting the text into a word document and sending them through.  

My Mum has just completed 6 rounds of EC treatment. Next week I will be asking ask her onc to advise re. aspirin or LMWH. Will let you know what he says.

With regard to diet/exercise: apparently cancer loves sugar and hates oxygen. Cutting down on sugar intake and doing some exercise (to oxygenate cells) may help. Red and black berries, red and black grapes and blueberries are packed full of cancer fighting antioxidants. Recommend that you look into research re. blueberry powder and cancer.

Good luck.