“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.
Hello Kerry. Looking to understand too. What I do not understand are not knowing the type of MBC most of the people have on this site. They write about treatments and tests, but we can't relate because we don't know their type. For an example, I have luminal A. 90-100% estrogen and 50-60 progesterone. All other tests, I have given here to help others. Could you share with us your latest DX type in which has responded to meds for your type w/o progression for so many years? Thank you in advance.
As I’m in Australia I get a lot less information about the genetic makeup of my tumours but I was tested as 100% responsive to Oestrogen and 80% responsive to Progesterone. I can’t recall what the HER score was but low so maybe 1. I’ll try and check that out.
I started on Letrazole but a scan after I reported a very minor symptom showed rapid progression into my skull. That was deemed to meet the criteria for a treatment change. I had nine rounds or 27 weeks (2 on 1 off) of IV Abraxane. After that I was to start Exemestane with the option of Afinitor. I decided I would take both as Afinitor trialled well although latest reports show it’s actually been even more effective than it trialled as. I had to stop Afinitor after about 10 months due to liver inflammation which is a rare side effect. The doctors decided I’d stay on Exemestane until I had significant progression and they thought that could be into my liver. I only have bone mets. That was April 2017 and until March 2023 I had no significant progression and many Mets including the breast tumours were invisible on scans. The March scan showed a mesenteric node had been invaded so the radiologist told the oncologist to book another scan for no more than 12 weeks so he could check it again. That was done and the node, which I recall was about 20x13, was halved in size. So I stayed on Exemestane and the December scan also showed the node met continued to shrink. I’m booked for scans in June and I’m expecting more of the same. The oncologist I saw in December thinks my cancer is aging out although I’m only 64 and as it hasn’t mutated in 9 years she thinks it might not. I was doubtful about that but a lady on another site has been stage four for 22.5 years to date and has been on Herceptin for most if not all the time so her cancer hasn’t mutated in over 22 years. She had a couple of nodes invaded like me but she stayed on Herceptin and, like me with Exemestane, it regained control of the Mets.
I know from reading so many posts that some doctors and patients change treatment as soon as there’s some progression or markers rise but my markers are 19 and normal is anything under 35 at my lab.
I’m classed as stable because I still have active mets but one scan the right hip lights up and the next time it doesn’t but the left one does, as an example.
I have regular Xgeva injections but I only have them quarterly now as opposed to monthly. And I take Loratidine because a very large study conducted in Sweden showed that it extends survival time for six cancers including breast cancer. Other antihistamines work for different cancers but it’s loratadine that works for breast cancer. It’s cheap at approximately 15c per day too. There’s a multitude of reports on NIH and many researchers calling for a proper random/blind trial but it’s so cheap that I doubt it will ever happen. I can post a link to the article if you would like to read it but it’s been posted before so you might have already read it. Aside from Caltrate Plus (calcium/vitamin d) which I have been prescribed I also take biotin and fish oil daily. And dark chocolate 70% which has improved my wbc.
I think that’s it for me. I only go to the clinic every six months now for scan reviews and I just passed the 9 year mark with de novo stage four DCIS cancer.
Thank you so very much for all the information. So you would then be luminal A too. I am on everolimus and exemstane now and my numbers just went up a lot and I have only been on the pair for 3 months. Scan soon as last was Feb. I don't drink soda, nor eat fast food and I try to eat healthy. Are there any foods or drinks your dr told you not to have or that you don't eat or drink? Some people don't drink orange juice for an example or dairy. Thanks again. Your info helps a great deal.
I think only grapefruit juice was a no no. But with the anorexia I was limiting what I ate to one piece of rump steak every second day so I’m not really the person to ask on that question. And green tea sometimes. Under normal circumstances I’m like you. I eat home cooked meals where I control how it’s cooked and I don’t eat junk food. I haven’t gone vegan or turned to alkaline foods although when I was having radiation on my spine I was advised to avoid acidic foods and I did. Mostly.
There was a post on another site where a cancer researcher discussed why we need to wait out a five or six month period on treatments plus tumour markers can go up when a treatment is working. I’ll try and post the comment I’m referring to.
“I understand your concern completely, so let me help put it in broader - and more promising - perspective:
THE REALITY OF TIME TO RESPONSE (TTR): The situation is a lot more hopeful than might appear. Let me address the issue of what’s called Time to Response (TTR) in the real world (more about that shortly). The median Time to Response (TTR) for ANY of the approved CDK inhibitors, like palbociclib (Ibrance), abemaciclib (Verzenio), and ribociclib (Kisqali) is not ever less than at least about 3.x months, out to ~5.3 months for the fulvestrant (Faslodex) + palbociclib (Ibrance), as confirmed by the Waller et al. real-world IRIS study (in JCO Global Oncology), and Palumbo et al. (in Advances in Medical Oncology), among many others.
THE VALUE OF PATIENCE: What that means is that to be truly fair in judging whether your regimen is providing significant positive benefit, we would be reckless in not waiting to conclude on this issue for AT LEAST 3 complete cycles of treatment, BUT preferably 5 – 6 complete cycles, otherwise we may prematurely reject a highly effective treatment regimen.
THE ISSUE OF TUMOR MARKERS: Within this time frame – min (3 cycles) to outlier (5 -6 cycles) - tumor markers are known not to be sufficiently assured to be reliable indicators of potential benefit. Indeed as I have oft noted, transient increase in serum tumor marker values – aka, “TUMOR FLARES” (sometimes also known as “SPIKES” or METABOLIC FLARES) - on starting treatment has been well-documented in many malignancies including breast cancer, and in fact this may be accompanied even by some progression of the cancer on imaging.
BUT: that reflects only that we have not waited long enough for a real-world time-to-response (rwTTR) to set in.
LESSON: With the best of therapies, patience is critical BUT I acknowledge, easy to say, and by no means easy to conjure up when patients, quite understandably, believe they are seeing their tumor markers seemingly raising alarm bells. Those earlier months can be a “white-knuckle” source of anxiety so reach out as you did here to others on these forums who may provide some needed reassurance and broader clinical perspective.
BOTTOM LINE: During the time before reaching median time to response, therefore, tumor markers (and even imaging results) are unreliable, and should not be used to prematurely terminate a treatment regimen. These regimens are exceptionally effective, if allowed sufficient time to work, in the overwhelming majority of cases, extending both overall survival (OS) and the time before recurrence (if any; known as progression-free survival (PFS)).
Hope this helps clarify the issue.
Best fortune to you.
Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Member, European Association for Cancer Research (EACR)
Society for Integrative Oncology (SIO)
International Society for Infectious Diseases (ISID)
Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART)
International Cardio-Oncology Society (ICOS)
American Society for Bioethics and Humanities (ASBH)|
ORCID ID: orcid.org/0000-0002-7043-5937
”
He further went on to say in another post “And not only do we want to allow time to response (TTR) to be achieved for the CDK inhibitor palbociclib (Ibrance), but also for the endocrine agent fulvestrant (Faslodex). As I first pointed out in my paper on fulvestrant [Community Oncology, 2007], the median time to response (TTR) for fulvestrant is at least 12 – 14 weeks, so due diligence would require waiting through no less than three or four full months cycle to allow for emergence of clinical benefit, independent of tumor.
As a researcher, I know and celebrate that there are some highly promising breakthroughs waiting in the wings in just the next 18 months (and that I’ll sketch in future postings), which will help transform oncologic therapy in quite dramatic ways, a shared journey for all of us here. “
He’s referencing CDK but my experience with AI also involved a wait and see approach last year when I had obvious progression but the wait turned out to be beneficial.
Super helpful Kerryd. Patience is indeed a virtue. I just get worried when waiting and not knowing if the bone pain and overall pain is a side effect of the everolimus/exemestane or progression. Checking my calcium in my monthly blood work for me is also useful along with all the other criteria. Thank you once again for taking time to post and explain his explanation. Surely others will benefit too with your kind response. Blessings
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
Following the trend
How does it start when your stage iv (which has mets to my lungs) start possibly appearing elsewhere???? My onco just called me at home.
Is it ok to get eyes dilated while on Ibrance and Faslodex
Ibrance/Pfizer copay assistance card
