Topic: ALL MY TRIPLE NEG SISTERS!

Gina -- It's always so heartening to read stories like yours -- thank you so, so much for posting.

I'm trying to follow a regimen like yours (apparently my system does not like flax seed).  I also upped my intake of fruits and vegetables, especially blueberries, and use walnuts or almonds on my morning cereal.

 I talked to a nutritionist at Kaiser who wanted me to be eating 50 grams of fat a day.  I don't think so!

Here's hoping our home-grown clinical trial has good results!

Max

Hello Dear Gina,

So nice to see you dropping in. I will always remember your kind and calming post to me when I first found this sight.

I think of you often and I'm so glad you are doing well.

Had my 2 year anniversary in June and am still dancing with NED.

Hugs to you and all my TN sisters,

Sue

Gina,

That was just what I needed tonight.  I was unable to complete my rounds with Taxotere because it was causing me huge symptoms of neuropathy (at a third of the dose no less!) and my onc was afraid if we continued I would have permanent damage.  But I have been slightly concerned because I know it has shown good results for us.  I am actually having 2 additional rounds of Carboplatin and Cytoxan instead (had 4 already). 

And I had heard that 5 years was an important maker for triple negs - the chance of a recurrence drops somewhat significantly if you make it past the 5 year mark without one. 

Congrats to you and your sister!!

Yea Gina! That's GREAT! I just passed my 3-year mark and feel confident I will live many, many more years! Be well all of you!!!!

Hey Gina,

I have read this site many times but only recently discovered this Triple Negative forum. I read your post and it really lifted my spirits. I am 40 yrs old have 4 teenagers and just started my chemo for trip neg last month. I have had 1 dose of Taxotere/Avastin (too many SE, I had to stop the clinical trial) and 3 doses of Taxol. I have 6 Taxol's to go then 4 A/C. I have read so much negative about triple negative, it is so good to hear some positive. I will definitely be on here alot. Thanks for listening

Marci

Fairly new to this whole thing. Diagnosed with Stage 3, TN mid May. Cancer center wanted me to participate in a clinical trial but my insurance company said no way. Thought I was handling it pretty well and taking small steps to offset news of the disease and some of the effects of chemo and maintain a positive attitude. Tumor was shrinking after first two doses of AC chemo. Then I started finding out all the "bad stuff" about triple negative cancer and the tumor decided to get larger between the second and third dose of chem. Tumor becoming resistant to chemo or forming scar tissue? Not known at the moment. For the last month, I have been drowning in negativity and unable to see a way forward. Wasn't thrilled with one suggested course of treatment which consisted of moving up the surgery to deterrnine what was happening. Requested a second opinion. Talked with one of the center's top onc and he recommended pursuing a different course of action which involved more tests to try and determine what was happening. Like this treatment plan but seems that two of the top guys disagree. My case will be presented to the tumor board tomorrow and I will hopefully know more by Friday. Hope that they decide to go with the treatment plan that I have chosen. Do not really have the energy to battle over this and hope I do not have to do so.

The new onc did manage to give me some of the more positive news about triple negative cancer like the fact that the longer we go without a recurrence the more likely it won't come back and some research that looks promising.  More upbeat then I have been in the last month or so. Need to be able to look forward with hope. Thanks nosurrender for adding to the positives.  

Triple Negatives, there is a post somewhere about a vaccine for triple negatives that looks hopeful.  See if you can find it.  It gives a lot of hope. Maryiz

Here is the post about the vaccine:

For months, Dr. Joseph Baar, director of breast cancer research at University Hospitals Case Medical Center and medical director of UH's Center for Survivors of Breast Cancer, has been waiting to get approved for funding to test a vaccine for early-stage triple-negative breast cancer to help fight recurrence....

 http://www.cleveland.com/living/plaindealer/index.ssf?/base/living-0/1220949186108841.xml&coll=2

HI, 

I have just gotten the report that I am triple negative. I picked up the report from the medical records dept at my hopsital to go to the Surgeons office yesterday and the final report had just came back so, I did not talk to my Dr about it he does not even know yet. I AM GOING TO THE BREAST SURGEON MONDAY !!  THANK GOD.   I am Stage 2  grade 3 triple negative. The mass is almost 3cm. My dr said i could opt for lumpectomy or mastectomy and if there were no nodes involved I probably would not have to have chemo but, that was before the triple neg results were in.  It looks like alot of you girls have had chemo even with out lode involvment. Is that because this can be more aggressive??   I am trying to stay positive and not worry much but this kinda took the wind out of me.. I did get good news my bone scan came back clear yesterday!!!!  :)   Any info or insights would be great. 

Thanks so much to all of you this web site has been a god send, 

Deb 

Gina - thank you for the good news and a positive attitude. It's so easy to lose sight of both those things.

Happy anniversary.

susan 

My understanding, Gina, is that now that you are 5 years out, you have a much better prognosis than er/pr+ sisters!  Congrats!

Hey Gina,

Thanks for the positive update. I have read that our chance of recurrence greatly drops after 3 years and then down to pratically nothing after 5 years. One report said TN could count themselves actually CURED after 7 years. Thanks for the hope. I have one year down and many more to enjoy.

Debbie

Hello dear sisters,

I really needed to read this post tonight...I am one year since dx ...can you tell me when I can count from...mast/chemo ...or can I count one year now....thx so much for this post Gina xxx 

Hi,  I did all that stuff too....lost 30 lbs, flax seed daily, exercise, run, less fat, veggies and fruit.  But the triple negative cancer came back within five months.  This is shitty.  Who cares?  I am ranting and angry.   Why can't I have 16 years? 

girls you all are triple neg i am erpr postive her2 neg what does that make me i have been fighting liver bone skull and chest mets for a year now the chest mest just showed up about a month ago  deb from ky