Shannon Doherty & The Amount of Misinformation About MBC
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Oops, temporary lapse. Smiling and singing now. “Hakuna Matata...”
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In looking up information on Verzenio—I stopped it last week after six months due to severe side effects—I learned the only countries it’s legal to advertise drugs is the U.S. and New Zealand. According to some medical professionals, the proliferation of these ads on tv has people going to their doctor requesting drugs that have absolutely no connection to what ails them. (Ask your doctor is VenIbraPiqEllRay is right for you.) How good of a job are those ads if that’s happening?
Advertising has always been about showing the most beautiful side of a product and much more so in today’s hyped-upped visual world. It seems nothing is allowed to even be average. Perfect hair, teeth, lips, clothes, shoes, cars...no room for error! We are stuck with seeing the glossy side of mbc portrayed via drug ads in the U.S.
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Divine- Yep, that is one of the many things wrong with the U.S. Healthcare system. "I want some of that Ibrance/Piqray". Not.
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Sorry, I am late to this conversation... my mom was originally diagnosed in 2011 with Mod. Diff. IDC with focal dermal lymphatic involvement; ER+99%; PR+98%; HER-2/NEU Neg; BR=9/9=Gr 3; Ki67=80%; Oncotype=36. Had a unilateral mastectomy and benign lymph nodes; Stage 3b. After surgery, she took a variety of aromatase inhibitors for about 11 months but then chose to go off due to side effects. Declined chemo after the mastectomy.
I guess we should not be surprised that in April 2019, she had recurrent metastatic IDC, dermal lymphatic invasion, bone metastases, ER+100%;PR+66%;HER2-; Stage 4. Is responding well to Arimidex and Ibrance -- as of September 2019 and again in January 2020, her PET scans are showing the tumor in her armpit, lymph nodes, and hip bone are shrinking and no new tumors. I guess it doesn't really matter whether she is Stage 4 or Stage 3b; once it has recurred and has metastasized, the treatment plan is very different.
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The drug manufacturers target patients because it works, sadly. My DH is a doctor and thinks there are major ethical issues with it. Drug companies target patients (and then in many cases pay for patients' copays) so that the patients keep pushing for the drugs. For a drug like Ibrance, which is about $150 thousand per year or more, if as a result of an ad seen on TV, it is requested by only 20 people in each of the 50 states in the US, that is a revenue add of $150 million per year. Realistically, it is probably requested by a lot more than 20 people per state and drug companies can easily amass an additional $1 billion or more per yearin revenue from these ads. In the case of Ibrance, that would only require 150 people or less in each state requesting it. Easy money.
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True - and how many times have we read on here about folks in smaller hospitals or metros who get oncs who aren't aware about Ibrance and that standard of treatment and perhaps go with an older approach? Maybe they are more general oncologists or what have you, but if one patient brings it up and causes the doctor to find out more and then the dr potentially prescribes to rest of his patients well then, there you go.
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SondraF, I'm not particularly a fan of the ads (MBC or others) but you bring up a good point. I began treatment at a more general onc practice. They didn't have much to offer when I didn't tolerate 2 different IV chemos. I transferred to a larger teaching onc center. Everyone I meet with focuses on breast cancer. I'm now on hormone therapy/targeted therapy w/Xgeva and doing much better physically and emotionally. Also, some of those ads may tell people that we're not to be feared or dreaded because we have MBC.0
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Count me in as someone who is not too bothered by the drug ads. I also feel it is a way to get needed information for people with chronic illness. I know some people feel advertising is a waste of money with drug prices so high - but most of the drug cos' marketing budget is spent marketing directly to doctors. Also, if the websites with package inserts and other info are part of "marketing" I don't mind that either. I think it is overall a "good" to have this info readily available. If doctors have to answer questions or fend off misguided patients, I think that is part of their job.
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Just noticed this thread and read it all, and wanted to put out there that I am also planning on a "full recovery" someday, so I don't have any issues with State Farm wishing the same outcome for Shannen...
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Ciaci, maybe it's just me, but as a woman who's been on this forum since 2011 and has witnessed the loss of scores and scores of some amazing women members here to metastatic breast cancer, who I'd gotten to know and who had so much to live for and wanted to do so much more in their lives and who were not ready to go; and as a woman who was diagnosed stage iv de novo and had eight years of progression free survival before having progression twice in one year, your comment about State Farm comes across as insensitive. While a very minute percentage of women may somehow beat this diagnosis, and you may even be one of them, the vast percentage of women, and men, diagnosed with metastatic breast cancer. die from complications of the disease.
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Thank you divine. While I generally remain optimistic to some extent, I am very well aware of the reality of mbc. I am also keenly aware of the fact that I am the exception at this point in time, with no real explanation as to why I have had no progression. Others with very similar bc profiles have not been so fortunate. I can plan all I want, but the ugly reality is that mbc is not curable and the number of exceptional responders/outliers is still very small. I am considered one of them but I never, repeat never, forget that all of that can change in a heartbeat.
Ciaci, your optimism is admirable and I wish you the best but there is no cure for mbc. I say this from the POV of over 8 years of NEAD and with the clear eyed knowledge that this can change anytime.
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Hello community members. Thanks as always for sharing your thoughts and experiences.
We Mods told our editorial staff about the confusion around metastatic staging in this thread.
Here is our BCO Editorial response:
It is true that both the American Cancer Society and the National Cancer Institute say that the stage of a breast cancer at first diagnosis does not change if the cancer spreads beyond the breast or if a metastatic recurrence is diagnosed years later. However, it's important to know that this is done for statistical reasons so researchers can more accurately track survival rates between people who are initially diagnosed with metastatic disease (de novo) vs. people who are first diagnosed with earlier-stage breast cancer and then have a metastatic recurrence or spread.
Still, most people and doctors use the terms "stage IV" and "metastatic" interchangeably, whether or not a breast cancer is initially diagnosed as metastatic or as a spread or recurrence, and the treatment options are essentially the same in both situations. For example, it's extremely rare to hear people diagnosed with stage II disease who then have the breast cancer come back in the bones five years later describe themselves as "stage II with metastatic recurrence." Those people consider themselves to have stage IV/metastatic disease.
We realize the differences between what the Breastcancer.org site says and what the ACS and NCI say are confusing. We are working to make this information clearer on our website to help people understand how the terms used in research may differ from what you may hear from your doctors and in the breast cancer community. It's also important to know that the American Society of Clinical Oncology talks about staging in the same way Breastcancer.org does: https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/stages-cancer.
Because the ACS pages on staging were last updated in 2015, we've reached out to the ACS to talk about ways both organizations can present the information to minimize confusion.
In the meantime, we have scheduled a Breastcancer.org podcast with our medical adviser Dr. Brian Wojciechowski, a medical oncologist, to help our listeners understand this issue. Please share any questions you may have on this thread, and Dr. Wojciechowski will do his best to address them on the podcast, which we will go live on the website sometime in March.
Again, thank you for your input – it always helps us better serve the Breastcancer.org community.
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Thanks for this update, mods. I do see the importance of distinguishing the two groups for research purposes, but for patients, their doctors and the public - metastatic cancer is metastatic cancer. And “staging” as a term does imply a linear progression, a series of phases or changes that one goes through. ie, stages of childhood, stages of life, etc. So, it seems rather natural to describe progression of a disease as a series of numbered stages and to be in a later “stage” when the disease has migrated and become more threatening.
Thank you again for providing insight and clarification.
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