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1maJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 1maJ Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 3:14pm
Hi everyone, I posted to this thread in 2017, and here I am in 2020 and still free of cancer.  I am more than 5 years from diagnosis, and will be 5 years from end of treatment in spring of 2021.  I think that is going to be my official celebration :) 

This group was SUCH great support to me, especially in the beginning when I was so scared.  Thank you all!

xxxx
Ima 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 3:37pm
Hi Ima,

So wonderful to hear from you, again. Please put us on your calendar for Spring 2021 so we can rejoice with you.

I hope more survivors post. It will greatly help us a community to hear the positive stories and I know there are a lot out there.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 3:44pm
Hi All, 
It was 10 years today when I was diagnosed with stage 3c tnbc. I was in treatment for quite a while. I stuck with the treatment and told my oncologist to throw everything they had at it. I think they did that but I am here to tell about it today. I was a part of several clinical trials and that I am proud of and think that one of them might be the reason I am here writing this. I plan on having a celebratory toast tonight to mark this day.
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 4:22pm
Hello!

Hope I can give some encouragement.  I was diagnosed 11 years ago, Stage 1.  Second diagnosis was a recurrence 10 years ago, Stage 3.  With the help of a clinical trial and extensive radiation, I'm still in remission and no evidence of disease.  I finished treatment for the recurrence a little over 9 years ago, but still see the oncologist yearly, more for my peace of mind.

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 10:23pm
Hi Rigatonismom,

Thanks for posting and thanks for your participation in clinical trials. 

So uplifting to read the stories.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2020 at 11:14pm
Dear Donna,

The years go by so quickly. I remember when we first met on the board (2009?) and then a few years later, I think in Houston, in person? Congratulations!!!!!!

What is most remarkable to me is your continued support for all here including some very tough days for you, personally, but somehow, someway you managed to be such a wonderfully important, informative, supportive part of our TNBC family. 

We are all so fortunate that you have given so generously of your time. Thank you!!!
You truly have blessed us with your presence. 

Be well/safe dear Donna.

with my love to all here,

Steve




I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2020 at 10:36am
Hello All!   It has been some time since I posted.
             Be encouraged everyone!! I remember when I was first diagnosed in the Fall of 2008 looking at archives of survivors 10 years and more and wondering...It hasn't been easy due to a marriage separation however the Good Lord got me through. One step at a time, one day at a time! I am very thankful. No matter what you are going through there is always HOPE!! God Bless everyone and be encouraged. You are not alone!

        Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lindz Quote  Post ReplyReply Direct Link To This Post Posted: Sep 20 2020 at 1:33pm
oh I needed to see this today!! I was recently diagnosed - IDC, triple neg, stage 3
This week I started to look for long term survivors with a similar diagnosis, you’re the hope I needed 💓
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lorene Quote  Post ReplyReply Direct Link To This Post Posted: Sep 20 2020 at 3:35pm
I have been blessed!  It will be 19 years next month in October I was diagnosed with breast cancer, had chemo, and radiation.  I've had no recurrence!  My faith has been strengthened throughout this process, as the Lord has been with me every step of the way.   I thank you for this site and all the encouragement I received from many of you in those earlier years.  
                
In Christ,
Lorene

dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2020 at 5:22pm
Hello Everyone,

I haven't posted here in quite a while, but as of today, I am officially 10 years removed from the very last radiation treatment I received on December 6th, 2010.  I cannot express how grateful and blessed I feel to have hit this decade milestone. For those who are just starting their cancer journey, keep the faith. It is a long and difficult road, but just take one day at a time and you will get through it. This site was a lifesaver during my treatment days and even for the first several years post treatment when recurrence worries were constantly in my thoughts. So many great women and men on these forums with great advice and support. My best wishes to all of you for continued good health and happiness. 

xoxo,
Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2020 at 5:27pm
CONGRATULATIONS. LISA!!!!!

Keep up the great work!!!!

Warmly,

Steve 
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2020 at 9:36pm
Dear TNBC Family,

I think it is so important that we hear from as many survivors as possible . Understandably, many come back to this site when there is, God Forbid, a recurrence but many, also understandably, stop posting when they are NED (No Evidence of Disease) or are celebrating a 5th, 7th, 10th, 12th or 16th (like my daughter) or 20th anniversary....

It will give all of us (especially Newbies) much encouragement and I hope we hear from some more women.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2020 at 6:08pm
I am one that doesn't come on often. I've probably even posted on this thread. This site was a great refuge for me, finding it 6 years after I had been diagnosed. At the time of my dx, TN hadn't even had a name. It will be 20 years this January since my dx. Yahoo! Good luck to you all. 

Ha...I am editing, only because I saw my signature that said I was dx in Feb. Amazing how one forgets. I found my lump in January but didn't get dx until first part of Feb. The details do get a bit sketchy after awhile. 


Edited by kirby - Dec 07 2020 at 6:12pm
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2020 at 6:19pm
Hi Kirby,

I do remember you! I'm so glad to hear you are doing well and approaching the 20 year mark. That is awesome. 

Very encouraging to all of us...

Lisa
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2020 at 6:44pm
Hi Kirby,

I remember you as well...20 years....wow that is truly wonderful!!!!!!!!!!!!!

Thank you so much for posting!!!!!!

Be well and happy holidays.

with my love to all here,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2020 at 9:29am
So nice to see familiar faces. Welcome to the new ones. We are all sorry to have to be here but this site provides so much information and support. It was so nice knowing we are not alone. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2020 at 1:57pm
Hi Everyone,

I am posting on this site to offer hope and love to all.  I have just completed my testing and appointment with my oncologist.  I am four years from diagnosis and have received the all clear for another year yesterday. 

I elected to have the 3D mammogram this time around.  Apparently that is optional (and at a cost to the patient as most insurance companies do not pay for 3D, just 2D).  I always schedule a PRN ultrasound right behind my diagnostic mammogram so I can have the order and pre-approval for an ultrasound if needed.  Luckily, one was not needed.  

I am not sure if this is true or not but my medical oncologist said that "TNBC breast cancer typically has a recurrence within the first 3 years" and I should start to relax now that I am in year four.  She also said she counts the years post treatment and not post diagnosis so technically I am 3 1/2 years from the completion of my treatment.  

I long for the day when I don't think of cancer and recurrence.  I am happy to have the test and appointments completed for 2020.  God bless you all on this site.  We know the anxious times and can ban together to get us through this.

Happy Holidays to all ~ Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2020 at 3:18pm
You are my Shero. I am 8 years out.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2020 at 3:22pm
Congratulations Donna. What was the clinical trial 10 years ago?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2020 at 3:58pm
Clifford1,

It was a clinical trial of a study drug called Iniparib combined with Carboplatin and Gemcitabine.  It was a Phase III Open Access study when I enrolled.  Unfortunately the study failed to meet the endpoints and Iniparib was never approved for use for TNBC. 


Overwhelming Disappointment

The subsequent open-label phase III trial adequately powered to assess the addition of iniparib to gemcitabine-carboplatin accrued rapidly, and an expanded access program to provide triple-negative breast cancer patients with access to iniparib prior to the planned U.S. Food and Drug Administration submission and approval ensued. The outcome of the trial—final results of which were recently reported by O’Shaughnessy and colleagues,2 as reviewed in this issue of The ASCO Post—was an overwhelming disappointment; the coprimary endpoints were not met, with iniparib treatment being associated with nonsignificant increases of 1 month in median progression-free survival and 2.5 months in median overall survival.

This trial’s unfortunate results were followed by a phase III trial in squamous cell lung cancer and a phase II trial in platinum-resistant ovarian cancer, which also failed to demonstrate an advantage for iniparib-containing treatment. In June 2013, the manufacturer dropped development of the drug.

What Went Wrong?

So, what went wrong with the phase III trial, particularly following such exciting phase II data? The use of iniparib was clearly biologically plausible, and its evaluation in the triple-negative breast cancer population seemed ideal, since these tumors bore elements and features similar to those of BRCA-mutant tumors. In addition, emerging data in BRCA-associated ovarian cancer suggested a signal of efficacy for this class of drug.

The randomized open-label trial enrolled 519 patients with baseline characteristics that were well balanced, with 57% receiving first-line therapy and 43% receiving second- or third-line therapy. Exploratory subgroup analyses by prior lines of therapy suggested a potential benefit in second- and third-line patients, but it is difficult to generate a hypothesis to explain this further.

Although it is well recognized that triple-negative breast cancers are a heterogeneous group, perhaps the clinical assays used to identify patients for study eligibility were not sufficient for identifying the subgroup most likely to benefit from PARP inhibition. The signal that a given subgroup may benefit and that iniparib might work in certain molecular subtypes of triple-negative breast cancer suggests that perhaps intrinsic subtyping may be of benefit. However, extensive biomarker analyses performed after the initial phase III results came out failed to identify a clear predictive marker. Analysis of the molecular subtyping of specimens from more than 300 patients enrolled in the trial with regard to exposure and response to iniparib may help to further define characteristics associated with benefit or no benefit.

The fact that patients in the control group of this trial were permitted to cross over to iniparib has been implicated as potentially biasing the overall survival results. Overall, 59% of patients in the control arm were allowed to cross over and receive iniparib after central confirmation of disease progression. As usual, allowance of a sequential exposure to iniparib in the control arm, which greatly facilitated rapid accrual to the trial, could reflect receipt of a more active therapy of proven value than the subsequent lines of standard chemotherapy administered beyond disease progression in the investigational arm.

Confounding this further were subsequent reports detailing that the mechanism of action of iniparib was not a true PARP inhibitor; it exhibits 1,000-fold less activity than other PARP inhibitors, a feature attributed to a carboxyl group that potentially weakens its bond to PARP. This difference in mechanism of action may also result in its apparent lack of toxicity seen with other PARP inhibitors, such as the recently approved olaparib, particularly in combination with chemotherapy. The signal of benefit noted in the phase II trial and in the second- and third-line patients in the phase III trial suggests that iniparib probably works differently from what was originally expected and from a true PARP inhibitor.


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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