“Exceptional Survivor” Wonderful arti... - SHARE Metastatic ...
“Exceptional Survivor” Wonderful article Bestbird/Anne wrote🌸
Drat behind a firewall so I cannot read it...
When she was diagnosed with breast cancer, the outlook was grim. Seven years later, she’s an ‘exceptional survivor.’
Exceptional Survivors are patients who have far outlived their prognosis for reasons that are not fully understood, regardless of whether they had an atypical response to a specific therapy.
by Anne Loeser, For the Inquirer
Updated April 25, 2019
One of the most perplexing aspects of cancer treatment is predicting whether a specific therapy will be effective for a given patient. Many of us know cancer patients who have outlived their prognosis, and/or have responded to a drug for an unusually long time. Conversely, other patients do not fare well at all.
Most patients fall somewhere between these extremes. Yet patients at either end of the spectrum may hold the key to making medicine even more precise by providing valuable information about exactly what it is that makes them exceptional.
This subject is particularly important to me because I have metastatic breast cancer that cannot be cured. Yet my unusually positive response to treatment – and how long I’ve survived — make me a true outlier. If the factors that led to my exceptional response could be leveraged for others, it’s possible that outcomes for cancer patients could improve.
At present there is no “industry standard” for classifying atypical patients. These categories have been suggested by the Metastatic Breast Cancer Alliance:
Exceptional responders: patients exhibiting an unusually favorable response to a specific treatment protocol compared with other patients on the same protocol.
Rapid progressors: patients displaying an unusually poor response, or no response, to a specific treatment protocol compared with other patients on the same protocol.
Exceptional survivors: patients who have far outlived their prognosis for reasons that are not fully understood, regardless of whether they had an atypical response to a specific therapy. Exceptional survivors may be considered to have an atypical response to their disease by virtue of substantially outliving their prognosis.
The last decade has witnessed an increasing emphasis on identifying and targeting genetic mutations in patients’ tumors. Yet patients are far more complex than the sum of their DNA. Atypical patient responses may not only be due to mutations, but also to other medical conditions and the medications taken for them, supplements and lifestyle factors, the use of complementary practices such as acupuncture and meditation, and the interaction among these components. Studying these dynamics becomes increasingly important for defining groups of patients who are likely to achieve success on a given treatment, as well as those who may achieve no benefit whatsoever.
I fall into the exceptional responder and exceptional survivor categories. By the time I was diagnosed in 2011 with metastatic disease after four years of misdiagnosis, the outlook was grim. Tumors speckled a lung and a liter of malignant fluid was drained in the hospital. I was short of breath, completely hoarse, and had Horner’s syndrome, cancer-related nerve damage that meant a drooping eyelid and inability to perspire on one side of the face.
Thankfully, I responded to conventional therapy and am alive more than seven years later despite the fact that the average prognosis for MBC patients is merely three years. In an effort to improve my odds of survival I altered my diet, added a naturopathic oncologist to my medical team, exercised regularly, and maintained a low body mass index. It is unclear whether these factors contributed to my relative longevity in addition to my standard treatment, which is why people like me need to be studied. To this end, I’ve enrolled in two investigational studies of atypical MBC patients which I hope will help extend the lives of future patients.
Further initiatives are needed to advance the investigation of atypical patient responses. In addition to launching studies directly targeting atypical patients, clinical trials of experimental therapies should be enhanced to identify and specifically study exceptional responders, rapid progressors, and exceptional survivors with regard to treatment outcomes. In both clinical trials and clinical practice, standardized questionnaires should be leveraged to gather information about conventional treatments, complementary practices, genetic abnormalities, and other illnesses to identify trends and correlations. The resulting data should be shared on a common platform to allow researchers to detect patterns and test hypotheses.
With greater understanding of patient outcomes, personalized medicine could one day transform all terminally ill patients into exceptional survivors who can manage their disease as a chronic condition.
Anne Loeser is a metastatic breast cancer patient who was diagnosed with early stage breast cancer in 1993. In 2011, MBC was found in her lung, pleura, and pericardium. In response to eight years of misdiagnosis, Anne began research that culminated in a comprehensive guide about MBC treatments, cutting-edge findings, and symptom mitigation that she continually updates and has forwarded on a complimentary basis to more than 3,000 patients and caregivers worldwide. In February 2019, she published “The Insider’s Guide to Metastatic Breast Cancer” in paperback and eBook formats on Amazon and launched the website insidersguidembc.com. A member of the Metastatic Breast Cancer Alliance and Komen Greater NYC, Anne lives with her husband and parrot in Salt Lake City, Utah. This guest column appears through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for more than a million patients and caregivers.
So helpful today as my six year survival (after a prognosis of 14 mos without treatment) is complicated by a really bad week of nausea, anxiety and insomnia😩My first Enhertu infusion went great but this my second one has been not so great.
My energy and strength are at zero...plus I fell and injured my nose so I am having difficulty breathing and cannot sleep well.I haven't had the energy to even shower since my fall🙄.My bones are aching as I haven't been able to do much of anything but watch Hallmark since I fell.I banged my foot on the tub faucet getting out and it is swollen and black and blue the same as my nose😏
My anti- nausea med seems to be failing as food smells make me feel ill.
JUST A BAD WEEK overall😢
I am still optimistic that Sunday will begin a new and better reality for me.Prayers please❤️👍
So sorry to hear this, we all have been there. Good days and bad days. Sending you lots of hugs .
Prayers lifted up for you 🙏🏻! Truly do pray you have a better week ahead.
I don't know about Enhertu, Figletf, but the last time I had IV chemo they allowed me to come in the following day for some IV fluids. That really helped me recover more quickly. They also gave me an IV anti nausea medicine on infusion day that was long lasting... and by the time it wore off, I didn't feel nauseated that week at all. Good luck!
I too was given anti-nausea meds and steroids at the time of the infusion that lasted three days but the Rx I was then to take seems to not be stopping my queasiness heading into my second week since infusion.I am to have my 3rd infusion Oct 26.Hope my body copes better with that one.
Sorry. I guess they gave you zofran... anyway, it made me very sleepy, but it stopped the nausea when I had it... back 22 years ago. Maybe some pedialyte might help. ... but always ask first.
Thanks ,my sister suggested ginger chews like I used on a cruise for sea sickness.They do seem to help 👍
Yes! Nabisco Ginger Snaps are great, too.
Also: When I have "Chemo stomach" I prefer to eat things that are white: grits, rice, oatmeal, cream of wheat, potatoes, pasta, cottage cheese, vanilla ice cream, and any kinda bread.
Sometimes I drop an egg into my already cooked grits and put it on medium in microwave until it's cooked also.
Thank you for sharing this article by Anne. Sending you hugs and prayers.
That was a nice read. Thank you for sharing.
I don’t know why one link was behind a paywall but the other wasn’t. Pumpkin is a handsome fellow.!
Thank you for sharing this article. I cried reading Anne’s obituary. What a trailblazer and inspiration for us all. I’m going to buy her book and check out Insoire. As sad as it makes me to lose a member of our community I would feel utterly lost and alone without this community. Peace love and hugs to all.
I too truly appreciate everything members have to contribute in this community
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