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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 12:28am
The term "aggressive" means fast growing and fast spreading. Its a cancer that rapidly grows And rapidly spreads. The smartest Scientists in the world are searching for alternatives to chemo, but as of now its still what all these same scientists say is what stops and kills this disease. NOBODY wants to do chemo, but read nothing but scientific works on TNBC Treatments for a week and you know thats the truth. Changing your diet will not stop existing TNBC from spreading, nor will vitamins, excercise, meditation or massages. It's an aggressive, fast growing, fast spreading cancer. In your breast it does not make you sick or kill you. If you catch it in your breast YAY! You have a chance to kill it and stop the spread, and survive. Act fast, as fast as medically possible, because remember it spreads and fast. Beyond your breast and adjacent lymph nodes it makes you sick - as in "I feel sick, I'm in pain" sick, and it's very, Very hard to beat once it's spread. These are the realities of it. Ask 3 or 10 or 1568 breast oncologists and they will all say the same basic thing about treating our disease - chemo is your best chance of survival. Full Stop, that's it. The questions are what chemos, what else to add to chemo treatments, what surgeries, etc., But honestly? No responsible Dr. is going to say sure, skip chemo, eat heathy, snort turmeric, hit the gym and you'll be fine. You can certainly choose to forgo chemo, but no doctor is going to agree that's a good decision. If you want to talk about "eating right", see the nutritionist that works with the cancer patients. Your oncologists job is to cure cancer, she can't do that telling what to eat, so yeah - she's not to psyched you're making appointments but don't want to discuss medicine but chat about food.
Radiation should always be after all your surgeries are over. I had surgical complications this time because of 8 year old radiation damage. It was no fun at all.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 8:08am
Kelly,

I agree with your comment 100%.  Eating well and taking care of our bodies should always be our goal to be healthier, but it won't kill cancer, especially something as aggressive as TNBC.  One of the best comments from my oncologist that I still remember when asking her about this - she said it's like trying to stop a steam roller with a thumbtack.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 8:12am
Please read this thread:


Breast Cancer: Don't Delay Chemo

Delaying adjuvant chemotherapy for breast cancer more than 60 days significantly increased the odds of premature death and distant metastasis, a review of almost 7,000 cases showed.

As compared with starting adjuvant therapy within 30 days of surgery, initiating chemotherapy at 61 days or later was associated with a 19% increase in the risk of premature death. In the subgroup of patients with stage III disease, the mortality risk increased by 76%. Relapse-free survival (RFS) and distant relapse-free survival (DRFS) worsened regardless of stage at diagnosis, according to Mariana Chavez-MacGregor, MD, of the University of Texas MD Anderson Cancer Center in Houston, and colleagues.

Patients with high-risk breast cancer (triple negative, HER2-positive, or stage III) seemed most susceptible to the adverse effects of delayed chemotherapy, as reported online in theJournal of Clinical Oncology.

"The adverse outcomes occurred when chemotherapy was delayed ≥61 days, which in most circumstances, gives medical oncologists enough time to initiate adjuvant chemotherapy," the authors concluded.

"Among patients with stage II and III breast cancer, triple-negative breast cancer, and HER2-positive tumors, every effort should be made to avoid postponing initiation of adjuvant chemotherapy. This may lead to an improvement in outcomes for these subsets of patients."


Delaying chemotherapy in breast cancer patients reduces overall survival, especially for those with triple-negative breast cancer


Postponing the start of adjuvant chemotherapy for more than 90 days following surgery may significantly increase risk of death for breast cancer patients, particularly those with triple-negative breast cancer (TNBC), according to a new study from The University of Texas MD Anderson Cancer Center. Further, the researchers found that factors such as socio-economic status, insurance coverage and ethnicity were associated with delayed treatment.

According to the study, published in JAMA Oncology, patients who start chemotherapy more than 90 days after surgery are 34 percent more likely to die within five years. Patients with TNBC who delay treatment have a 53 percent increased risk of death.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 03 2018 at 6:40pm
Donna, now I'm going to remember your onc's comment..."It's like trying to stop a steamroller with a tack" !
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2018 at 7:00pm
There is a legitimate situation in which to consider refusing chemo, and that is DCIS/Stage 1, no lymph nodes involved.
There are books written about Stage 1, DCIS (not IDC) with no lymph nodes involved, obviously, because the cancer has not gone outside the duct, where doctors are recommending all sorts of possibly unsubstantiated therapies,

not sure if this includes TNBC, all I know is TNBC is not normally confined to DCIS, I believe, it is usually progressed to IDC...but there are countless articles on this early stage...and how the pharma industry got it re-classified.

They actually did NOT call DCIS cancer, it was called "pre-cancer" until the chemo-pharma-industry got DCIS re-classified as "cancer"

Like I said, this is probably not appropriate for a TNBC/Stage 1/ no lymph nodes invloved, perhaps TNBC requires a more aggressive therapy.

wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2018 at 7:20pm
Gordon,

I agree with much of what you say, but wanted to clarify.  DCIS and LCIS is actually Stage 0.  Usually Stage 0 is grade 1.  
Most TNBC when diagnosed is grade 3 (fast growing).  


Stage 1 are tumors 2 cm or smaller and have not spread to the lymph nodes.  Most women at this stage have a grade 3 tumor.  I've only seen a few women, with very small tumors that were grade 2.  I don't believe I've ever seen anyone post on this forum who was Stage 0 or grade 1.  

Here's a link to Stage 1 and 2 breast cancers:





DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2018 at 7:21pm
Sorry, I meant Stage 0, not 1, thank you
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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TNBC NC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2018 at 4:00pm
Hi,
I am not sure if this thread is still rolling active, but I refused Chemo.  I had the Lumpectomy and 11 lymph nodes removed.  Cancer was in 2 or 3 of them.  The tried to get me to do chemo, radiation and actually have both breast removed.  I refused

I have a recurrence 18 months later that Metastasized to my liver, another lymph node plus now suspicion on spine,  I hate typing this. I don't want to feed it any energy

TNBC is not your regular BC.   I did 42 Chemo treatments in 12 months.  It was working for a while, the tumor in my liver reduced itself 70%, then it stopped working

I am now on my second clinical trial, praying it will work.  The first clinical trial didn't

FOLLOW YOUR DOCTOR'S INSTRUCTIONS.   Get 2 opinions, but don't play with this.  This is definitely a different monster.

My sister got the same disease a year later,  she did everything the doctor told her to do and she is not doing fine!  Absolutely no issues at all!
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2018 at 4:42pm
Thank you for sharing your experience with us TNBC NC, and I'm so very sorry you've been thru all of this. What a terrifying, exhausting time you've had! I do understand not wanting to write, talk etc., That feeling that it's "feeding the beast", I was in that space last year. You coming here and doing it anyway will change lives - save lives - and that's a very brave and selfless thing. Seriously, thank you!
Now - what can we do for you? Is there a doctor or institution you'd like to get in to? clinical trials you'd like more information on? You have our prayers and our gratitude, please let us know if there's _anything_ we can offer to try and help.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2018 at 5:17pm
Ditto Kellyless, is there anything we can do to help you out?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2018 at 6:08pm
TNBC NC,

Ditto what Kellyless and Mainsailset.  It took such courage to share your story.  I truly believe that TNBC is unpredictable, doesn't play by the rules and we should attack it with the big guns.

What can we help you with?  We have lots of warriors who are willing to research clinical trials and other sources for you.  Just let us know.  You are not alone!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2018 at 1:51pm
Kellyless,
Thank you for the reply.  Yes I am seriously interested in a clinical trial that I can explore and have ready ASAP in this one doesn't.  I just received word 10 minutes before typing this text that my Sister-In-Law lost her battle.  She actually had bladder cancer.
My doctor is aware I am exploring other available trials. Please check avenues I can research and contact.

Thank you very much!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2018 at 8:00pm
Thank you for your story. My wife has had lots of chemo, in 2008 and 2016, but it killed the cancer, hopefully anyone reading this can have a PET scan, according to any insurance, because it shows possible cancer cells growing.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2018 at 8:52pm
TNBC NC,

Are you being treated at Lineberger Comprehensive Cancer Center
Chapel Hill?  Have you been tested for the BRCA mutation or other breast cancer genes?


Here's a link to metastatic clinical TNBC trials in North Carolina only:



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 1:51pm
I got it 123Donna! Thank you very much!!

Is there a forum on this site where TNBC Patients are discussing Clinical Trials? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 2:01pm
123 Donna,

No I am being treated at Carolina Bio-Oncology Center located in Huntersville, NC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 4:11pm
Hi TNBC NC, we've had lots of threads here about clinical trials, you may find good info in the search 'archive' section. I was on a clinical trial and am pretty darn sure it saved my life.

You can google "Clinical Trials" and a website for NIH will pop up where you can put Triple Negative bc in their search engine. Lots will come up.

Please note that not all clinical trials are available to all clinics. That's important because maybe the ones that fit your situation might not be available to your doctor or even in your state. If you delve into the NIH search results generally at the bottom of each trial that is accepting patients it will note which clinics are offering the trial or it will give a contact number and email. Don't be afraid to email and ask questions, my experience is that they're generally very good about responding.

Good luck and please post any questions or any good information you find back here to share!!
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 8:36pm
Hi,  I am sorry you are dealing with cancer.  I was diagnosed in May 2012.  Stage 1, Grade 3, 1.5cm tumor. No node involvement. I was diagnosed around the time Robin Roberts was diagnosed with MDS or myelodysplastic syndrome.  And, I know a few women who died after going through chemo and radiation or the cancer recurred soon after treatment.  Also, I know there are women who don't have problems after chemo and radiation. I had a double mastectomy.  I refused chemo after doing a lot of research.  I read medical peer reviewed articles from the New England Journal of Medicine and the Book, 'A World Without Cancer'.  Chemo is the standard treatment for tn.   Treatment is very individual and personal...there is no right or wrong treatment.  Also, all tn tumors are not the same.  There are 6 subtypes; and the research has not been done to ascertain which subtypes respond to chemo.  And, pathologist don't test for the different subtypes. Therefore, you have to do what makes you comfortable.  I have not had a recurrence and I will be 6 years out in May.  I try to eat a plant based diet, limited to no alcohol, and I take curcumin supplements sometimes. Also, I watch my weight. I cook with a lot of spices. And, I add tumeric and black pepper to my meals.  The bottom line for me was: I did a regret matrix.  If I had taken chemo and the cancer had returned, I would have regretted it because I chemo is toxic, success is unpredictable, and the side effects are brutal (short and long term).  And, I was not at Peace.  If the cancer comes back, I am okay because I have been healthy for 6 years, and I may have ended up at the same place either way.  I am not trying not to die...I am trying to live.  If you want to talk offline...inbox me.  Sending Peace in whatever decision you make.  Everyone's journey is different.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2018 at 7:25pm
Mainsailset and Clifford i really appreciate your reply. I had 42 Chemo treatments all using Taxol.  I had metastasis to the a new lymph node near the subject breast and Liver.  The Taxol did reduce the tumor 70% then it stopped working.  I started a clinical trial 2 weeks later, at which point several more small tumors grew in the liver during the interim waiting for the first Clinical trial.  First trial did not work   i'm on a second trial now.  i will know if its working in mid February.  i am aggressively seeking new trials  in case this one doesn't work
i just had an infusion yesterday.  Will type more.  Lately it seems to take all my energy to just type or text.

Yes i would love to connect offline. Please send request
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2018 at 10:04pm
I forgot a very important point.  I asked my Onco to give me odds for survival with and without chemo.  There is a application called Adjuvantonline. Adjuvant online is a suite of online tools that is used by doctors and patients with early cancer to discuss the risks and benefits of getting additional therapy after surgery. The tools estimate the risk of negative outcomes (mortality or relapse) without systemic adjuvant therapy, and forecasts the reduction of these risks afforded by various therapy options.  Without chemo, I had a 75% chance of the cancer NOT coming back.  With chemo, the chances went up to, I think, 87%. Chemo would have given me a 12% gain, along with the other short term and long term chemo side effects.  My Onco explained the short term and long term chemo side effects in detail. Please understand that I totally understand the decision to hammer tnbc with chemo and radiation because it can be aggressive. I am simply sharing my journey.
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