Info Sought: Exceptional responders and Outliers
Comments
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I've met with Dr. Burkard of the University of Wisconsin and asked him why he based his definition of Exceptional Survivors on the date of their original bc diagnosis (if they have recurrent mbc). His response was that these patients have actually been living with bc cells in their body since their early stage diagnosis, although the disease was dormant for a while until it recurred. Hence he deems them Exceptional Survivors.
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Hi Bestbird. I’m still trying to wrap my head around his definition. While I get it, it leads to some questions in my mind.
First, does this imply that all those with similar diagnosis never had cells spread? This runners counter to the notion that the cells remain dormant until some event activates them.
Secondly, his theory implies that the cancer of those with a long duration between original diagnosis and metastatic disease have cancer which is definitely less virulent and slower moving. While I do know that this is often the case, I do believe that things can accelerate even many years out. I would be case in point as I was almost 17 years between original and mets but had rapid progression in the first six months following mets diagnosis. Things have slowed again but....
Thanks need to go to Wildplaces who pointed me to the Oncolive article. BTW Tina, there was an “other” option as this journal was also not on the list
Pat
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I wonder where my wife's case would fall. She had non-Hodginks lymphoma 12 years prior to her stage IV breast cancer diagnosis. I know technically she would probably be simply considered de novo but I often ask myself how this scenario has influenced her outcome.
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I am still here. Coming up on 11 years this months. Stage IV de novo mets to Liver, bones & chest nodes. Her2+ and weakly ER+. I have been NED since June 2008. Stopped Herceptin in July 2017 and last pet still shows NED.
Jennifer
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Yay, Jennifer! Great news!
Tina
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yay Jenn! I was looking for the ❤️ button like on Facebook! Haha! It’s been a while since I have checked in! So, so glad to see you and other familiar faces
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Jenn, happy to hear from you and even happier to hear that you’re doing well.
I’ve had a rough few months (Never mentioned it on bco because I was waiting to have some more definitive answers. Speculation makes me crazy). Several types of imaging later, nothing was found and pain could either be arthritis or continuing se’s from letrozole. So... happily ensconced in the beginning of my 8th year of NED.
Take very good care of yourself.
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I like Dr Burkatf's definition. My initial diagnosis was 2008. Miniscule mets to 2 nodes. 4 yrs of letrezole and i quit due to side effects. 5 more yrs pass on nothing and dx with one whopper lesion in Humerus . Stage 1. It had to be there quite a while. Couldnt ignore pain any longer. What triggers dormant cells to act up? How many of you would suspect a met if you werent scanned?
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This is the best board to go to when you are starting to worry about things. Many blessings to you all! And KJones, thank you for that bible verse.
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A question for exceptional respondents.
How much protein and dairy do you eat?
What is the basis of your nutrition? Do you do a lot of sports?0 -
Protein- amount unknown but I am conscious of needing some protein daily. I am not a vegetarian but I mainly eat chicken and fish if I have animal protein.
Dairy- limited to cream in my coffee, yogurt , and ice cream
Basis for nutrition? I eat whatever I want . I have a basically healthy diet, though I'm not a big eater in general, so there is nothing compulsive in my habits and nothing is forbidden.
Sports- No, I take walks with my dog.
I just hit the 11 year mark at stage IV. I have been NEAD since initial tx.
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Bestbird -
How did I miss this thread? I'm not sure if you're still looking for exceptional responders and outliers, but I meet the criteria, unfortunately, as we all do.
I was diagnosed 2008 Stage 4 DeNovo with mets to lung and spine and had about 17 lymph nodes removed during a radical single mastectomy, HER2+ followed by radiation. At that time, I began treatment with Herceptin and anastrazole. To this day, I continue to be on Herceptin every three weeks, and a daily dose of anastrazole. My mets have remained unchanged all these years.
I have no idea why I've made it this long.
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