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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: Apr 24 2013 at 8:23am
Malaak,

Thank you for posting and sharing your experience with Robin Roberts.  Everyone on this forum wants to congratulate you, Robin, and everyone on the foundation board that is working hard to find a cure for TNBC.  This website and message board is a lifesaver for everyone getting diagnosed, going through treatment and just needing support and encouragement.  I've been following Robin's journey for some time and watch GMA every morning.  Her strength and courage is just amazing.  

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 arabella Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 8:27am
Originally posted by Gigisummer Gigisummer wrote:

Hi all,

I am a long time board member of the TNBC Foundation. I visit the forums almost daily as it gives me inspiration to keep working hard to ensure that we have the funding to support patients and fund research. In fact, I am up now in the middle of the night because I have our annual fundraiser Peace, Love and a Cure on my mind! Though I visit, I rarely ever post which made tonight difficult as I can never remember my password or login!

Anyway, one post prompted me to respond. It was about my friend Robin Roberts who many if you just found out was a triple negative breast cancer survivor. I thought I would share with you that Robin announced she was triple negative on the air with me 3 years ago when I was a guest on "Good Morning America." Since then, Robin has helped this Foundation and many more, even entering the "Sisters Study" with her two sisters to help advance research. Additionally, we honored Robin at our Peace, Love and A Cure fundraiser last year along with GE, survivor Cristy Norwood, and Dr. Lisa Newman. Peace, Love and a Cure is our largest single event to raise funds to support our mission. If you go under the links for video, you will see an amazing video that we shot. Robin was so gracious with her time and the video was shown at our event and is online for all of you to see. We even had our founding Board member, Nancy Block Zenna's daughter Jolie, present the award to Robin. If you look under events, you will see pictures of the two of them. Lastly, Robin has been an Honorary Ambassador for the Cure for our event the last 5 years, lending her name and face to help raise awareness. So while she may not talk about it all the time or include the information in all interviews (the writer could have left it out), I just wanted to share that she has embraced our community wholeheartedly. As you know, Robin endured the worst symptom of Chemo there is when she was diagnosed with pre-leukemia. She had to undergo a stem cell transplant and her immune system is still weak. She needs our prayers now and in the future. She is a tremendous friend and its purely a coincidence that we are both dedicated to all of you on the forum. Have a wonderful day and know that I am always reading and always working on your behalf. Yours in sisterhood, Malaak


Dear  Gigisummer (Malaak), 

Thank you so much for your above post.  It has been discussed here lately (since her last 2013 T.V. special) in at least two forums  that some of us were not aware of her TN diagnosis.

I suppose that once you have this diagnosis and you hear anything on TV mentioned about breast cancer, your ears perk up to hear something......anything...... about this rare Triple Negative.   Until I had this diagnosis, I simply thought breast cancer was breast cancer and that hormone issues caused it.  The truth is I  wouldn't have paid attention probably to the words "Triple Negative" before I had it.  When I tell folks what I have and mention the words Triple Negative, their blank eyes just look at me.....no recognition of those words at all.  Often now, when I explain to friends and family what I have, I always mention that it's the same kind of cancer that Robin Roberts had.  For some reason, saying that makes it more "explainable" for me....that someone they might have heard of actually had this as well.  It makes it "real" to other people I think.  

My sister came across an old Prevention mag just last week (can't recall the year) where Robin did an interview and in it discusses Triple Negative in question after question.  My sister called me on the phone and read the whole interview to me.  I was going to post about that in this Forum.

Thank you so much for taking the time to post this information.  I so appreciate all of Robin Roberts' efforts to help this Foundation and others.  I so appreciate all of your efforts on behalf of this TNBC Foundation to fight this dreaded disease.  If it were not for this Foundation and its  Forums, I might possibly be a resident of a mental health facility today.... ;-)   Seriously,  it has been a lifeline for me.....full of much needed info and hope.  And the Forums' posters are so kind and well informed and uplifting.    So, your hard work has not only helped in saving lives..... in many instances it has also saved our mental health. 

Robin Roberts is in my thoughts and prayers.

Again, I am so grateful to you and for you ......thank you for taking the time to post.  

My deepest heartfelt thanks to you, 

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 8:52am


     Hello Malaak, Thank You for shedding light on Robin Roberts and her support of this work.   This TNBC website is a true Blessing and is bearing very good fruit. I express my sincere Thank You to the Foundation Board...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 Boo Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 11:58am
I would definitely like to follow Annie and repeat that this forum is a lifeline for me.  It has been more powerful in my treatment and my mental ability to cope than any other resource.  I appreciate your efforts Malaak and I wish only the best for Robin Roberts and feel that she is strong and will make it through this treatment.  From Canada again, I express my sincere thank you to the Foundation Board...Love Anne
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 8:25pm
I really admire Robin Roberts and how she has handled being in the public eye while battling these diseases. She is a beautiful and classy lady and an inspiration to women everywhere, whether fighting cancer or not. I do hope this pre-leukemia condition has been put into remission. The fear of developing another nasty cancer from the treatment of TNBC is almost too much to think about. 

Onward and upward Robin Roberts!
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2013 at 9:13pm
Malaak,

Thank you so much for taking the time to provide the update! It is so wonderful to have people like you working on our behalf. The efforts that all of you put forth make all of this possible for us. The Forum is such a Godsend for all of us and I can't tell you enough how much we all appreciate it!! This cancer is ugly but the Foundation is a bright spot in our world!

Also thanks for the insight with Robin Roberts. It is nice to know that someone with such a public audience (and beautiful face!) is out there supporting the cause!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 1:40pm
We are so proud of our Denise (dmwolf) and all she brings to our TNBC family. Clap  I couldn't think of a better person to be the voice for TNBC.  Denise, you helped me during some of my most darkest times and lifted me up when I needed it most.  Love you dear friend!

http://www.independentnews.com/community/article_d63c41fa-b355-11e2-a3b1-001a4bcf887a.html
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 TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 1:52pm
That is a really nice article on Denise...thanks for posting this Donna...

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 Boo Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 2:36pm
Hello Denise.  A pleasure to read such an article and to know you a little bit better.  I have appreciated your wisdom and advice to all; your dynamic attitude not to mention sense of humour.  Thank you Donna for posting.
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 2:39pm
A wonderful article about Denise.  Thanks for posting it, Donna.  Denise provides invaluable information on this site, as well as "attitude advice."  I have a favorite post of hers, which I have printed and reread when I need it:  "It's all a roll of the dice.  Good attitude, bad attitude; aggressive, passive; religious, atheist.  Some people get a version that's curable, some don't.  Some of the incurable versions burn through us quickly, others smolder for years.  A second roll of the dice.  We can control how we live, but much less so how long.  So let's make the most of today!  None of us knows how many todays we get.  . . . . .If you do recur, it is not a sign of failure.  If you don't recur, it is not a sign that you are living the right way."  Posted by dmwolf on January 3, 2012.
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 2:40pm


Thank You Donna,     I did not know about the line of work that Denise is in. Wow, talk about being able to put yourself right there in the midst of research in something that a person has gone through.   I also like the factual representation of TNBC right in the opening of the article. We are very fortunate to have Denise among us here...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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2013 at 10:40pm
Hi,

What wonderful women and men we have on the forums.

Donna, thank you for posting the article about Denise/dmwolf.
Denise, thank you for being YOU.
Lisa, your positivity shines thru your user name Triple Positive Girl.
Boo, you are an inspiring and strong woman.
Charlene, thank you for your good posts like today's reminding us of one of Denise's prior posts........
        one of her many wise and great posts.
Annie, thank you for your many sincere and caring posts.

With caring and positive thoughts to all,
Grateful for today............Judy   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2013 at 4:39am
Thanks for posting, Donna.  I really enjoyed the article.  Thanks too Charlene for posting Denise's quote......such truths.  

Couldn't help but  notice how wise and informative dmwolf's posts always are.   Now I understand why.  Thank you so much for all that you're doing Denise!  Beautiful photo of you as well!

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2013 at 1:55pm
Hi Denise,
 
The tuth is out; "YOU ARE A BEAUTIFUL LADY" inside and out.  Thank you for changing careers at such a traumatic time in your life.  Thank you for the humor, honesty and confidence you share with all of us.  I know for a fact that you have helped me in my journey.  I also know that your journey has been rough, but you've really turned it into something positive for all of us.
 
Thank and Love,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:31pm
Missing our dear friend Zacar (Caryn).  Today is her birthday.  
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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2013 at 8:42pm
Hi, all!  Thanks so much for all the love.  Having my 15 seconds as a cancercelebrity was a trip, let me tell you.  Totally surreal.    Someday I'll have to write out the details, many of them humorous (featuring, being photographed next to a chalk drawing of me, mountains of chocolate, friends and colleagues wearing "Wolf Pack" t-shirts, younger daughter racing to remain at the head of the walk the entire time, my mother and brother mixing with work colleagues, Joel wearing a bra covered with pictures of me bald and sick, a speech that made my older daughter cry, and a women's run on the men's bathroom).  

I'm missing Caryn too.  Both of them, really, Caryn Rose and Caryn Cole. 

Love you guys,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 8:01am
Denise and all,

Denise, I am also very grateful that we have you to provide us with all of your knowledge and insights and your research talents. You have certainly helped me! And your attitude to exercise and fitness are inspiring.    Your experiences with the cancer fundraising event sound so life-affirming. Probably many of us dont like to admit all the positives that the cancer experience have brought to our lives, but your story certainly exemplifies how one can turn it into a positive force in your life.

I know that I am a more giving and empathetic person because of my cancer experience, and that most of the relationships that I have with family and friends are now deeper because of it. And I have many new friends that i never would have had and have renewed old friendships. I live a fuller life because of it. I found God again and now have an amazing church family, and I have the opportunity to give back to my community through the work we do at this church. And my coworkers who do research and development of new therapeutic drugs tell me that my story inspires them.

I am feeling well now and am loving being in remission. It's easier for me to see the positives right now!
My heart and prayers are with all of our sisters who are sick due to TNBC or treatment at this time, and that they may find strength and inspiration to keep living full lives and be healed.

Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 9:36am
Good Morning Sisters,
As I sip my coffee, I am reflecting on good and positive things. 
Beth:  Being in remission.  I am so happy for you as you share the good things that have happened in your life, since cancer.  I can really identify with all you said.
 
DWolfe:  Sharing a wonderful experience she just had.  What a fun thing to do with your whole family and thank you for sharing with us.  I can't wait for "THE REST OF THE STORY"....
 
Being able to remember sisters who are no longer with us here, but forever in our hearts... Both Caryn's and so many more.....
 
Reading posts from Donna, Annie, Charlene, Kaye, Judy, Lisa, Deb, Beth, Denise and so many more and feeling as though I know each of you personally.  What a wonderful Support Group.
 
Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 12:16pm


        Lillie, How very nice! I feel the same way. It is a pleasure as well and just wish someday you never know we, many of us just may meet but until then we are as you say all of us as close as we can be and I think that is a gift!...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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 12:28pm
Lillie, Annie, Denise and everyone else!

I feel through this forum that even though we've never met in person, we're close to each other.  I value this friendship and sharing this journey with all of you.  This is one journey I wouldn't wish on my worst enemy.  But I couldn't have found better friends to walk this path with me.  Maybe one day we'll be able to have a TNBC meeting?

Hugs,
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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