![]() See that line in the photo that says "From baseline," and then see underneath where it reads "-100.00?" That is the miracle news I received yesterday April 1 2019! A small part of me is waiting to get the call that this was an April Fool’s joke but no one would be that cruel so I know it’s for real. I started writing this on a train home from a nine-hour day at Memorial Sloan Kettering in NYC where, in between needles, IVs, EKGs and scans, I got the most amazing news of my life at 12:24pm. It went something like this … A trial doctor whom I'd never met before walked in and, looking very neutral, said “We had two radiologists look at this and I’ve looked it over three times myself and well..." Now, at this point I felt like I was going to actually vomit because I thought he was about to say they found a new tumor or it grew and I was off the trial. But instead he said this ... "Your recent scans show no evidence of disease.” To which I replied "WHAT? WHAT did you say?! I'm NED? I'm NED?" I am apparently prone to repetition in states of extreme joy and shock. (NED is short for no evidence of disease) - the magic acronym that every cancer patient vies for but does not actually think they will ever see with stage 4 cancer. Last summer, when my cancer spread very aggressively in a matter of weeks when my last trial failed - including spreading to multiple tumors in my brain, I didn’t even know if I’d be alive right now never mind NED. He handed me that piece of paper in the photo. I put it up in front of my face as tears welled over and I said, "Sorry, I just need a minute." I think I then proceeded to repeat myself several more times making sure I really understood exactly what he was saying. How is this possible and what does it actually mean? Great questions, thanks for thinking them :). Well, although I hit the crap cancer lottery having cancer at all, then having stage 4, then having my cancer mutate to one of the most aggressive and difficult to treat kinds of breast cancer - triple negative, this time my luck went in equal measure the other way. It turns out that through genomic sequencing testing (IMPACT testing) my doctors discovered that a main driver of my cancer is a rare mutation (N-TRK fusion) that is seen in less than 1% of tumors and even more infrequently in common cancers like breast. BUT, I HAVE IT! That is not where my luck ends though because apparently it was a strong driver and it was everywhere the cancer spread - my brain, bones, lymph nodes, adrenals and liver. My cancer seems to share my philosophy on life of "Go big or go home." Miraculously, some godlike brilliant researchers developed a drug that targets this exact mutation and there just happened to be a trial for which I became eligible for at MSKCC - the hospital where I am treated in NYC, at the time I needed it. A few years prior - before this discovery - this finding wouldn't have mattered - I would not have lived long enough to benefit. That is how actually lucky this whole turn of events is and how insanely important it is to keep supporting brilliant researchers who are focused on metastasis. This does not mean there is a cure for cancer or even that MY cancer is "cured." It means that I basically hit the ultimate Powerball lottery of genetic mutations and found a drug that put my cancer into remission, hopefully for a very very long time. I am considered a CR (complete responder) to this amazing trial and it happened within eight months. To explain what remission means, at least as I understand it, is that I could remain NED for as long as this drug works and as long as any microscopic cancer cells that may still exist in me do not mutate and outsmart it - causing resistance. I will be on this drug, which I take orally every 12 hours, for the rest of my life or until it stops working. I feel great on it and can live a full life taking it. Because this mutation is on the pain receptors - sometimes my whole body is in pain right before my next dose but then it goes away quickly and I can manage this and a slightly reduced immune system no problem. So, while stage 4 cancer is not like a flu where it can just be “gone” or “cured,” this is as good as it gets being NED and I'll of course remain on the trial with regular monitoring. I don't really have the words to express the overwhelming gratitude for my oncologist Dr. Andy Seidman, the researchers we fund Dr. Nikhil Wagle and Dr. Sarat Chandarlapaty and their teams, and my trial doctors and their team who are making this possible - Dr. Andrew Drilon and Dr. Alison Schram - and every other incredible human being involved with running this trial, developing, and manufacturing this drug, and for foundations like Alex's Lemonade Stand that funded early studies on this - that are giving me more time to watch my children grow up, laugh with my friends and family, travel to see more of this amazing planet, write, do arial yoga and walk on the beach. I think of all the long nights these doctors must have spent studying in high school, college, medical school, and for their boards, and all the long hours and days they sacrificed time doing other things to be in a lab developing this drug. I think of the researchers we fund, my oncologist, Dr. Andy Seidman and all the other researchers and oncologists out there doing this work right now and I just want them to know how very worth every single second of their time was and is. If they knew. If they only knew, that I am writing this with tears of gratitude streaming down my face. If they knew and could feel what it feels like to give a 13 year old girl and her 10 year old brother more time with their mother and even a moment of relief from the constant stress they live with - I just hope they know what this means to me and every patient they save because there are no words. Thank you, is an insufficient start. I want to support their great efforts in the only way I know how: To continue to give them as much money as possible, as soon as possible, to keep doing what they do best. This drug is a monumental step in cancer progress but, it only benefits <1% of the cancer population and even then – many people develop resistance to it and I may eventually as well. This is important to understand as there is often hype and misleading headlines that come out leading people to believe that someone has found the cure for cancer when they really just saved a few unrelated mice. The problem with this is that needed research then does not get funded. I can assure you all, there is still no cure for cancer. This is a GIANT step in the right direction but we need more drugs like this to identify and treat the other 99% of patients. Research is the only way to get there. The gratitude I feel for this current outcome is overwhelming and I have a renewed sense of commitment to put my time and energy into this foundation (The Cancer Couch) that is raising money exclusively for MBC research. We need more drugs like this. Every cancer patient deserves to have the day I had.
57 Comments
4/2/2019 11:50:39 am
Absolutely amazing! Seems your Herculean efforts at fundraising have paid off. Bully for you! Doing the happy dance for you. Thanks for sharing your great news.
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Marcelle
4/2/2019 07:35:21 pm
Oh my beautiful friend. I have tears streaming down my face. So much love.
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Emily
4/3/2019 07:10:32 pm
Don’t forget those that weren’t as lucky.
ella jerry
6/23/2020 01:02:29 am
I NEED A LOVE SPELL THAT WILL MANIFEST WITHIN 24 HOURS CONTACT (DR JUMBA ) HE HIS THE BEST LOVE SPELL CASTER WHO HELPED ME RESTORE HAPPINESS BACK TO MY RELATIONSHIP
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Roxy Savage
4/2/2019 11:53:39 am
Over Over Over joyed for you Rebecca! You are a warrior and your body kicked *ss. AMAZING brilliant news. 😘
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Christine Schmitt
4/2/2019 11:55:12 am
Rebecca!!! I have been praying and waiting for this most amazing news. It’s beyond words for me. I am so happy your children get to be with their momma with more security and calm than just a few weeks ago. It’s got to be the best feeling ever. Period!
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Cathie Cortina
4/2/2019 11:57:51 am
So, so happy to read this post! Besides being overjoyed for you and your family, it gives hope to the rest of us fighting MBC.
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Laura McClay
4/2/2019 12:05:33 pm
Hi Rebecca!
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Kathy
4/2/2019 12:05:37 pm
Absolutely elated for you!! You’ve gone though things none of us ever should have. You fight for all of us cancer patients and give us hope. As a fellow cancer patient, who you have been so kind to, I write this with happy tears for you and your family. Now let’s raise money for more research for MBC and other cancers (my part). Happy NED day to you! 😘
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Eileen Schild
4/2/2019 12:07:27 pm
I love reading stories like this !!
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Kim DeYoung
4/2/2019 12:07:44 pm
How you show up, your "luck", and your journey are incredibly inspirational. You are a true force. You capture the breadth of your experience with such poignancy and I'm thrilled for all the days you can love and hold your children. xoxo
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Bette Carr
4/2/2019 12:07:51 pm
Rebecca, Jenn filled me in yesterday. I am over the moon happy got you and your family. God bless! Bette
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Erin ( and Fink ) Fink
4/2/2019 12:14:24 pm
Reb... crying tears of joy as I read this.... and next I’m going to donate again to the Cancer Couch. We don’t talk currently, and I am only remotely part of you life from the past, but I feel so passionately for you, and I am so fond of you and Tom. Blessings to the entire Scalera/Timlin crew.
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Dee Jakobsen
4/2/2019 12:30:38 pm
I am overjoyed to here this news!
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Anne Nolte
4/2/2019 12:33:20 pm
BEST NEWS EVER
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Doug J
4/2/2019 12:37:34 pm
Reb, when Kristina texted me yesterday I broke down almost the same way when you were diagnosed, but MUCH happier. You’re such a fighter and I’m so happy for you and your fam! You mean so much to so many people, especially my sister. Can’t wait to see you guys next time I’m home so we can raise a glass! Love you!
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Doug Bross
4/2/2019 12:38:41 pm
This.is.awesome! #RockstarReb
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Susan Melia
4/2/2019 12:43:24 pm
I knew it-you Rebecca are meant to stay.Your resilience during the roller coaster that was/is your diagnosis history-from stage 4 to 3 and back to 4 again is amazing-all while raising a young family. You are my hero and I thank you for mbc research funding thru CCF I vow to raise more money! Keep up the good work! You are a walking miracle!
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Andrea Krollman
4/2/2019 12:49:53 pm
The best news!! Thank you for sharing in your amazing day yesterday and all that you experienced. I hope many are moved to donate and keep the good news expanding and moving forward!!
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Ann Harvey
4/2/2019 12:50:59 pm
Beautiful news! So very happy for you and the others who will benefit from all you’re doing.
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MaryJo
4/2/2019 01:00:35 pm
What incredibly, amazingly, fabulous news! You have been such an inspiration to so many - and now you can keep on doing this amazing work for so many more!
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Catherine T
4/2/2019 01:02:43 pm
This is the most fantastic news. I had tears in my eyes when reading about your day. Words can't express how happy I am for you and your family.
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Michelle DIdner
4/2/2019 01:03:42 pm
Amazing news! I am so happy for you, and your family and everyone who you touch that gets to benefit from your magic and light and incredible energy. You are so beautiful!!! xo
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Kelly Shanahan
4/2/2019 01:12:35 pm
I am so happy for you Rebecca! May you dance with NED for a long, long time
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Jenifer Walsh
4/2/2019 01:46:48 pm
W O W!!!! AMAZING NEWS REB!!! So extremely happy for you and your family! 💜😘
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Shirley Ciampi
4/2/2019 02:02:47 pm
Reb...we are so happy to hear of this awesome news! Our prayers continue for more positive research!
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Heidi Sadowsky
4/2/2019 02:04:32 pm
Andy told me the awesome news yesterday. This is incredible. You are incredible. xoxoox
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Maggie
4/2/2019 03:17:21 pm
I’m so happy for you, your family and your dearest friends! 💗
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Mary Mansfield
4/2/2019 04:11:22 pm
Such extraordinary news! If what you give away comes back to you tenfold, then you may be on the receiving end of some serious karma. So thankful for the brilliant researchers who developed this trial and others that are literally saving lives. Incredibly thrilled and relieved for you and your family, Rebecca. Sending love to all, M&M
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Susan Fitzgerald
4/2/2019 04:14:08 pm
My dear,
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Lynn Edelson
4/2/2019 04:19:24 pm
Sweet woman...What a gift to you and yours <3
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Vicki Swanson
4/2/2019 05:01:58 pm
Over the moon for you, and grateful for the hope that you (and the Cancer Couch!) bring to others!! xoxoxo
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Susan Piccirillo
4/2/2019 05:24:44 pm
Amazing story! Amazing miracle of miracles! Will pray that the researchers continue to find ways to keep you and others NED and more importantly resistant free! So happy for you and your family. You are blessed... in so many ways! A true inspiration for so many young women suffering from this aggressive and cruel cancer. I will continue to keep you and your family in my prayers. I know my mom and dad and smiling . They admired you so! Congratulations on winning the best powerball lottery! LIFE!
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Laura A Burgoon
4/2/2019 05:42:08 pm
What amazing news. I pray that this drug is a game changer for you and others to live long and hardy.
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David Smith
4/2/2019 05:42:24 pm
Just what everyone has been praying for...
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Sue
4/2/2019 05:47:53 pm
As a fellow stage IV TNBC girl with young kids I so needed this tonight! You give hope to others during tough moments in this marathon. Sleep well this week!
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Colleen
4/2/2019 06:18:00 pm
Such amazing news!!! The Queen of Upgrades got the ultimate upgrade it seems! I'm so happy for you, your husband and your beautiful children...and all of us that have learned from you - your grace, your humor.
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Bethany Martine
4/2/2019 06:49:23 pm
So so so happy. God bless you and I pray this continues to work!
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Sandra
4/2/2019 07:32:45 pm
Hallelujah!!!!!!! So happy for you and God bless you!!! You are a big part of this miracle. We love you, Rebecca!
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Donna
4/2/2019 08:00:54 pm
AMAZING! Wishing you and your family continued blessings and that this is the beginning of a long happy healthy life... you deserve it! 💕
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Beth Hudkins
4/2/2019 08:43:09 pm
At Oxford Greens we're all doing cartwheels. This is a miracle, Rebecca. We'll continue our prayers. I can't due justice with words the utter and complete joy we feel for you and your family. God Bless you all. Sending love
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stacy
4/2/2019 09:25:15 pm
beyond amazing news. you are an inspiration to all. keep on, just keep on, we will support you and your maganimous work...here’s to you Rebecca. L’chaim
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Robin
4/3/2019 03:36:33 am
Congratulations. Your positive energy is healing.
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Tomasz Moczerniuk
4/3/2019 04:31:51 am
Best news I've heard all year! Rebecca, you are a fighter and you are kicking cancer's butt like you promised! Amazing and thanks for sharing! Sending thoughts, hugs and still prayers!
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Pia
4/3/2019 05:55:56 am
This is amazing news!
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4/3/2019 08:05:57 am
Moved by your beautiful news, so wonderful for you and yours!
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Tracey Kane
4/3/2019 09:23:00 am
What incredible news!!!! SO happy for you and your family!
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Lauren Villecco
4/3/2019 04:03:58 pm
Rebecca, I am so happy for you, and for all of the patients after you who benefit from this news! 💕
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Jennifer Marrelli
4/3/2019 05:28:21 pm
Best news I’ve heard in a long time. Think of you often and so happy to hear this. I’ve got tears streaming too 😘❤️
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caroline johnson
4/4/2019 04:36:31 am
Rebecca,
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Ellen Ciampi
4/4/2019 02:21:55 pm
You deserve this, Reb! God is so very good. Blessings and love to you and your family.
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Jen Shankle
5/3/2019 06:19:10 pm
YES YES YES YES!!!! I am late to this news but still beyond overjoyed!!!! I’m crying and smiling and just totally overcome with emotion!! This is amazing! We are all thrilled!!!!!! XXOO
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Pam
11/23/2019 11:19:49 am
First, I am so happy for you and so thrilled that this treatment worked! I also want to share that I have been diagnosed with the same gene mutation as yours, but it presented itself as mammary analog secretory carcinoma (MASC of the salivary gland), or, as it is now more commonly called, Salivary Secretory Carcinoma. For now I am fine because my salivary gland tumor was successfully resected, but should it return and metastasize, I would be a candidate for the same drug that gave you NED status. This gene mutation is so rare that I was very happy to stumble across your story. Like you, I am a wife, mom, and business owner in her late 40s, with a very strong will to live. I applaud the work you have done for the cancer community and will continue to follow it. Your in health, Pam
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ella jerry
6/23/2020 01:02:49 am
I NEED A LOVE SPELL THAT WILL MANIFEST WITHIN 24 HOURS CONTACT (DR JUMBA ) HE HIS THE BEST LOVE SPELL CASTER WHO HELPED ME RESTORE HAPPINESS BACK TO MY RELATIONSHIP
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8/23/2020 04:33:33 am
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8/23/2020 10:52:09 pm
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Kayla Martins
1/6/2021 03:18:27 pm
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