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1maJ
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Joined: Feb 20 2017
Location: Newton, MA
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Points: 15
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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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SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
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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
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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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rigatonismom
Senior Member
Joined: Sep 22 2010
Location: Albuquerque, NM
Status: Offline
Points: 266
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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.
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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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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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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
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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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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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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
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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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SagePatientAdvocates
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Joined: Apr 15 2009
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Points: 4748
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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
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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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Annie
Senior Member
Joined: Dec 19 2008
Location: Canada
Status: Offline
Points: 887
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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
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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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Lindz
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Joined: Sep 20 2020
Location: Roncesvalles
Status: Offline
Points: 1
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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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Lorene
Senior Member
Joined: Jul 10 2010
Location: Alabama
Status: Offline
Points: 211
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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
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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TriplePositiveGirl
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Joined: Oct 07 2010
Location: Los Angeles, CA
Status: Offline
Points: 667
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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
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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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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Dec 06 2020 at 5:27pm |
CONGRATULATIONS. LISA!!!!!
Keep up the great work!!!!
Warmly,
Steve
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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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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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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
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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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kirby
Senior Member
Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
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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
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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TriplePositiveGirl
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Joined: Oct 07 2010
Location: Los Angeles, CA
Status: Offline
Points: 667
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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
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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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SagePatientAdvocates
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Joined: Apr 15 2009
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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
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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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kirby
Senior Member
Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
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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.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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Penny
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Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 197
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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
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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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clifford1
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Joined: Jul 16 2012
Location: Decatur Georgia
Status: Offline
Points: 32
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Posted: Dec 12 2020 at 3:18pm |
You are my Shero. I am 8 years out.
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clifford1
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Joined: Jul 16 2012
Location: Decatur Georgia
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Points: 32
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Posted: Dec 12 2020 at 3:22pm |
Congratulations Donna. What was the clinical trial 10 years ago?
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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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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.
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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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