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  • minustwo
    minustwo Member Posts: 13,348
    edited October 2020

    Thanks Lumpie. I'm up for Prolia Shot #10 the first of the year. I'm assuming I qualify as "OLDER" so maybe I'll have less risk.

    Even though I looked up 'avlusive', I'm not sure what this means: Multiple regression results indicated the strongest predictive factor for osteonecrosis of the jaw to be avulsive or other dental treatment (P < .001).

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    MinusTwo: I don't have bone mets so I'm not super up on some of the necrosis concerns. I happen to know a couple of people who have had issues recently so I am somewhat attentive to related issues. I consulted Dr. Google and came up with a couple of articles referencing "a delicate surgery extraction or nontraumatic avulsion of the teeth" and "treated via nontraumatic avulsion and closure..." so I take this to be a particular technique for either extraction or something related/similar. Perhaps others can enlighten us. Thx.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    It was a busy week so I am going to circle back to the oligo mets discussion. sometimes progress seems to come so slowly. I think that we are still living in the wake of the time when mets were difficult to diagnose and there were limited treatment options. Now, we are living in the time of mets being expensive to diagnose - and insurance not wanting to pay for it. I get very frustrated when presented with a mathematical equation that says: "it would cost us ...some number... $250K in tests to get you one more year of life and it's just not worth it." They're not practicing medicine, they're practicing economics. We can agree that we need more cost effective surveillance... and I hope that research will focus on that. But hearing that it's just too expensive and that we're not worth it is a offensive and... it's hitting us when we are down.

    This affects me personally. I had no idea it was so difficult to get an initial cancer diagnosis. I thought if you had cancer it would be obvious because... they would just run a test and find out (note to readers, it also requires marginally competent physicians). And many of us are fighting the battle about brain mets. When they know that there is a > 50% chance that they will develop but the protocols still do not include periodic screening, that is very hard to understand.

    Thanks for indulging me.

  • illimae
    illimae Member Posts: 5,739
    edited October 2020

    Lumpie, brain mets can be very difficult when you suspect them but doctors don’t want to order the MRI without clear symptoms. Being HER2+ and having an MO who specializes in it and brain mets, I was lucky but I have suggested that others fake a headache if necessary to get the scan. I hate to do that but sometimes we have to force the issue.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    I know some who have faked headaches. The brain scan was one motivation for my enrollment in a clinical trial: a brain scan was part of the enrollment protocol. Crazy how we feel pressed to "play" the system.

  • BevJen
    BevJen Member Posts: 2,341
    edited October 2020

    Lumpie,

    Some of us are old enough to remember a lot about the "military-industrial complex" and the controversies over that. Now, we are living with the "big Pharma medical complex" and, as you said, we are just a cog in the wheel. It is incredibly ridiculous that more attention is not paid to this. Yesterday I had a conversation with someone who seemed to be fairly intelligent and well educated. When I said that I had metastatic breast cancer, here was her response: oh, BC runs in my family. I get regular mammograms. But what is metastatic BC? That just goes to show that even though there are those ridiculous commercials with all of the people so happy to have MBC, there is not only a services gap for us, there is a recognition gap. And to top it all off, even medical education must be against us bc so many docs think that you cannot do anything for MBC folks. Very frustrating.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited October 2020

    Yip...I feel somewhat written off at the moment, and I do think staff are just too swamped to actually read the research. They are firefighting so we have to flag stuff up.

    As to playing the system, these are our lives, if the system doesn’t support us well enough then we are forced to play it. I think the women in here are smart enough and tough enough to do that....we do it for ourselves and also those who don’t have the wherewithal to play the game, which just might be a game changer. There are many before us who have played the system just to get the things we now take for granted. Absolutely no shame in that!

  • JCSLibrarian
    JCSLibrarian Member Posts: 548
    edited October 2020

    Early on in my diagnosis, my MO told me in a sad voice that my only options for treatment were systemic chemo infusions. And those would not be very long as MBC was basically a death sentence, more for palliative care. I thought to myself this cannot be true! With my background in research, I looked through PubMed for information and treatments for my disease. I was able to locate many articles on using systemic chemo coupled with localized treatments to treat ogliometastic breast cancer. I am currently NED and no longer having infusions. The MO says he is now treating me with curative intent due to my research and persistence.

    Many thanks to the info I was able to get from BCO and this thread especially. My MO says he may be leery of treating any more librarians as they keep him on his toes and thinking. LOL!

  • BevJen
    BevJen Member Posts: 2,341
    edited October 2020

    JCSLibrarian,

    Great story. The bigger question is this: do you still see that same MO? I would have run for the hills, especially based upon your research!

  • Bliss58
    Bliss58 Member Posts: 938
    edited October 2020

    I agree with all the sentiments here about early MBC dx. Re: brain MRIs, although Her2 tends to move to the brain, scanning is not standard of care without symptoms. After year two of my dx, I talked it over with my MO saying we scan my body, but never my brain and I'd like to know sooner than later. She told me insurance will not pay without symptoms, "so give me something." It is sad that we must lie to get what we need, but she agreed and ordered the MRI. She listed that I was experiencing vertigo. Now that I have history, she's able to order one each year without me requesting or giving symptoms. It all can be so frustrating for us and MOs.

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited October 2020

    Thanks to everyone posting. The wealth of knowledge in this thread plus what you all bring to the thread is so helpful for everyone

  • tectonicshift
    tectonicshift Member Posts: 102
    edited July 2021

    I think brain MRIs should be standard. My grandmother died of breast cancer in the brain in the '70s. Okay there wasn't so much testing to do back then. But about 8 years ago a friend died of ovarian cancer in the brain. They had been scanning her body and thought she was NED from ovarian. Until one night she had a seizure. She was gone by morning. No one checked her brain.

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    TectonicShift: Yup. Regrettably, that is standard of care (at least in the US). If you are not exhibiting pronounced symptoms, "we don't go looking for problems."

    Clearly, we need to be doing more advocacy around changing this standard. I know that some active MBC advocates are working on this issue but I don't know whether the advocacy is being "sponsored" and supported by any organization. It is my understanding that there is a clinical trial doing research around the premise that identifying brain mets earlier may improve outcomes. I'll post a link if I can find anything.

    Here it is:

    Screening Magnetic Resonance Imaging of the Brain in Patients With Breast Cancer

    ClinicalTrials.gov Identifier: NCT04030507

    https://clinicaltrials.gov/ct2/show/NCT04030507?te...

    Trial site is in Boston, MA. The study is recruiting.

  • olma61
    olma61 Member Posts: 1,026
    edited October 2020

    Thank you, it is good to know they may be exploring this issue in research, Lumpie.

    I am one who kind of exaggerated some real symptoms I was having at diagnosis, in order to get a brain MRI. The second time I had one, I had some real symptoms and got the MRI in the ER (but no brain mets found). My former MO once discussed having another one done, after one of her other patients insisted on it and did indeed have brain mets. But then she discouraged me, saying, well, if we find anything then you have to go through an MRI every 2 months. I declined simply because, at that point, I really DIDN'T want to look for a problem. But, in reality, yearly screening brain MRIs would make sense.

    As for "give me something" I remember when I went for my spine rads, the nurse asked if I was having pain. I replied "only if my insurance co. wants me to". She laughed. That statement can actually be taken two ways, couldn't it? : o

    I really do agree that MBC patients are still being "written off" in many ways, although so many of us are outliving the current "median OS" stats. They've given us some more effective treatments, maybe they should start treating us as if MBC already IS the proverbial "chronic disease" that it one day may become.

  • tectonicshift
    tectonicshift Member Posts: 102
    edited July 2021

    I insisted on a brain MRI at original DX due to my grandmother dying of breast cancer in the brain. I insisted. I've had a couple more since then too (almost 9 years ago).

    From what I understand it's relatively difficult for cancer to spread to the brain but it's also relatively difficult for it to spread FROM the brain. The blood-brain barrier is very complicated and the brain is not like other organs. So if you have brain mets and can cut them out or zap them away, sometimes that really does the trick. I remember reading about a patient at MD Anderson who was stage IV with only oligomets in the brain. They treated with gamma knife I think, and like five or six or maybe seven years later she was still fine and NED. But if a brain tumor advances to the point of causing a seizure, it's usually too late.

  • moth
    moth Member Posts: 3,293
    edited October 2020

    ESR1 Mutations and Overall Survival on Fulvestrant versus Exemestane in Advanced Hormone Receptor–Positive Breast Cancer: A Combined Analysis of the Phase III SoFEA and EFECT Trials

    https://clincancerres.aacrjournals.org/content/26/...

    & plain language summary: "Patients with metastatic breast cancer carrying a particular mutation fare better on one form of hormone therapy than another and can be identified using a blood test, according to a new study.

    In a combined analysis of two major Phase III clinical trials, called SoFEA and EFECT, researchers were able to show that patients with advanced hormone-receptor positive breast cancer, which has developed a mutation in its androgen receptors called ESR1, fared better on a hormone therapy drug called fulvestrant, compared with another called exemestane." https://www.icr.ac.uk/news-archive/new-study-sheds...

    ESR1 can be identified through liquid biopsy

  • JCSLibrarian
    JCSLibrarian Member Posts: 548
    edited October 2020

    BevGen - I did not change MOs. My feelings were that he opened his mind to doing something else and being more attuned to his patients. We have a great relationship.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited October 2020

    JCSLibrarian, I love your story! That is very encouraging. I'm glad that your MO was open minded too.

  • bsandra
    bsandra Member Posts: 1,031
    edited October 2020

    Dear JCSLibrarian... wow, you met a wise doctor... but again your story shows how important self-advocating is. Thank you for your story...

    Saulius

  • moth
    moth Member Posts: 3,293
    edited October 2020

    I might have missed this earlier in the year but the SABCS 2019 videos are available for free online

    https://watch.ondemand.org/sabcs2019.htm



  • olma61
    olma61 Member Posts: 1,026
    edited October 2020

    great share, moth,thank you

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    Oncologic Outcomes No Worse With Newer Mastectomy Methods

    — Nipple- and skin-sparing techniques match conventional mastectomies in retrospective study

    MedPage Today October 14, 2020

    For breast cancer patients receiving neoadjuvant chemotherapy (NACT), long-term oncologic outcomes for immediate breast reconstruction with nipple- or skin-sparing mastectomy were comparable to total mastectomy without reconstruction, a case-control study from Korea found.

    https://www.medpagetoday.com/hematologyoncology/br...

    Primary Source: JAMA Surgery

    Source Reference: Wu ZY, et al "Long-term oncologic outcomes of immediate breast reconstruction vs conventional mastectomy alone for breast cancer in the setting of neoadjuvant chemotherapy" JAMA Surg 2020; DOI: 10.1001/jamasurg.2020.4132.

    Secondary Source: JAMA Surgery

    Source Reference: Fayanju OM, et al "Oncologic outcomes after neoadjuvant chemotherapy and postmastectomy breast reconstruction" JAMA Surg 2020; DOI: 10.1001/jamasurg.2020.4138.

    {Free access to press coverage. Log in may be requited. Not sure about Journals - may charge a fee.}

  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    Race Impacts Clinical Outcomes in HR-Positive, HER2-Negative, Node-Negative Breast Cancer

    Journal of the National Cancer Institute October 08, 2020

    • In this post hoc analysis of the TAILORx trial, the authors report higher rates of disease recurrence and mortality in black women compared with white women with HR-positive, HER2-negative, node-negative breast cancer. Multivariate analysis revealed that this racial disparity was not explained by 21-gene recurrence score, ESR1, PgR, HER2 RNA expression, clinicopathologic features, or treatment differences.
    • There is a need for greater awareness of racial disparities and increased representation of black patients in clinical trials. Additional investigation is needed to clarify the reasons for this racial disparity.
    {Free access to both press coverage, abstract and full journal article.}
  • Lumpie
    Lumpie Member Posts: 1,553
    edited October 2020

    Material and psychological financial hardship related to employment disruption among female adolescent and young adult cancer survivors

    Cancer First published: 12 October 2020

    The importance of addressing adverse financial effects of cancer among adolescents and young adults (AYAs) is paramount as survival improves. In the current study, the authors examined whether cancer‐related employment disruption was associated with financial hardship among female AYA cancer survivors in North Carolina and California.

    Financial hardship related to employment disruption among female AYA cancer survivors can be substantial. Interventions to promote job maintenance and transition back to the workforce after treatment, as well as improved workplace accommodations and benefits, present an opportunity to improve cancer survivorship.

    https://acsjournals.onlinelibrary.wiley.com/doi/10...

    https://doi.org/10.1002/cncr.33190

    {Free access to abstract. Fee for full article.}

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited October 2020

    Just for info, as this pertains to those of us moving into second line treatment where it seems we can’t access Faslodex in combo with a Cdk4/6 inhibitor if we’ve already had an inhibitor...

    Scotland backs Pfizer's Ibrance for breast cancer

    Scotland backs Pfizer's Ibrance for breast cancer

    Phil TaylorJuly 11, 2019

    Pfizer's Ibrance has been approved for use by the NHS in Scotland as a second-line treatment for advanced breast cancer after hormonal therapy.

    The Scottish Medicines Consortium (SMC) said Ibrance – a CDK4/6 inhibitor – can increase the time before the condition progresses and delay the need for chemotherapy in people with hormone receptor-positive, HER2-negative advanced breast cancer.

    Pfizer's drug was backed for use alongside anti-oestrogen drug fulvestrant for these patients under the SMC's Patient and Clinician Engagement (PACE) process, which is used for medicines to treat end of life and very rare conditions.

    It is estimated that around 400 women could be eligible for treatment with the drug each year in Scotland. South of the border in England, the National Institute for Health and Care Excellence (NICE) is still deliberating on this use for Ibrance with a decision due before the end of the year.

    At a PACE meeting to discuss Ibrance, patient groups and clinicians said that this stage of breast cancer is incurable and treatment options are limited.

    "We know that this approval from the SMC will be meaningful for the many patients and families who are affected by this type of advanced breast cancer," said Pfizer UK's oncology medical director Dr Olivia Ashman. "We hope the same outcome will be reached by NICE later this year."

    In the PALOMA-3 trial, Ibrance was shown to increase the time before the condition progresses, allowing patients additional months of life, and could also delay the need for chemotherapy with its associated side effects.

    Ibrance has been approved for NHS use in Scotland since December 2017, when the SMC gave the green light for restricted prescribing of the drug in first-line HR+/HER2- breast cancer in combination with aromatase inhibitor drugs.

    First-line use of the drug south of the border was rejected by NICE earlier that year but given the nod after Pfizer agreed a price reduction. Two other CDK4/6 inhibitors – Novartis' Kisqali(ribociclib) and Eli Lilly's Verzenios (abemaciclib) have also been approved by the SMC and NICE for first-line use.

    Both are also trying to get the okay for second-line use with fulvestrant. Kisqali was turned down by NICE for this use in April and is still under review by the SMC with a verdict due later this year. Verzenios meanwhile has been approved in England for previously-treated patients, but only via the Cancer Drugs Fund.

    Ibrance was the first CDK4/6 inhibitor to reach the market and is already a blockbuster with sales of around $4 billion last year. It is predicted to swell to $6 billion by 2022, staying well ahead of its rivals although both Novartis and Lilly's drugs are expected to compete closely for second place in the market.

    Earlier estimates by EvaluatePharma give Kisqali the edge over Lilly's drug with predicted sales of $1.6 billion in 2022, with Verzenios not expected to be far behind.


  • debbew
    debbew Member Posts: 237
    edited October 2020

    [Early research in vitro and mice]

    Calcium bursts kill drug-resistant tumor cells

    Multidrug resistance (MDR)—a process in which tumors become resistant to multiple medicines—is the main cause of failure of cancer chemotherapy. Tumor cells often acquire MDR by boosting their production of proteins that pump drugs out of the cell, rendering the chemotherapies ineffective. Now, researchers reporting in ACS' Nano Letters have developed nanoparticles that release bursts of calcium inside tumor cells, inhibiting drug pumps and reversing MDR...

    The researchers made a "calcium ion nanogenerator" (TCaNG) by loading calcium phosphate nanoparticles with the chemotherapy drug doxorubicin and then coating them with molecules that would allow TCaNG to target and enter cancer cells. Once inside cells, TCaNGs entered an acidic compartment, where the TCaNGs disintegrated, releasing both doxorubicin and bursts of calcium ions. When the team tested TCaNG on cancer cells in a petri dish in the lab, both ATP and P-gp production decreased, which allowed doxorubicin to kill the previously resistant tumor cells. When tested in tumor-bearing mice, TCaNG-treated mice showed significantly smaller tumors after 21 days of treatment than control mice, with no apparent side effects.

    https://phys.org/news/2020-10-calcium-drug-resista...

    DOI: 10.1021/acs.nanolett.0c03042


  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited October 2020

    From the journal of International Journal of Clinical Oncology, potential biomarkers to evaluate effectiveness of Ibrance / CDK4/6 inhibitor.

    https://breast-cancer-research.biomedcentral.com/a...

  • debbew
    debbew Member Posts: 237
    edited October 2020

    [Early, basic research]

    Breast cancer study uncovers new RNA targets for treatment and diagnostics

    The team discovered that two lncRNAs named TROLL-2 and TROLL-3 are associated with the progression of breast cancer. Tamping them down inhibited breast cancer formation in mice...

    They went on to show that when Tap63 is downregulated, there's a complex interplay between the lncRNAs and other proteins, including one called WDR26. That stimulates AKT signaling, promoting the development of invasive breast tumors....

    The researchers believe their findings could be used in several ways to diagnose and treat cancer. For example, they could help predict which patients are likely to respond to AKT inhibitors. There are several in development, including Roche's ipatasertib, which the company is testing in breast and prostate cancers.

    There could be treatment applications, as well, said Elsa Flores, Ph.D., who leads Moffit's department of molecular oncology and cancer biology and evolution program. The findings could point to targets for "therapies against metastatic cancers with alterations in TP53 and hyperactivation of the PI3K/AKT pathway," Flores said in a statement.

    https://www.fiercebiotech.com/research/breast-canc...


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited October 2020

    News you can use:

    From AACR Annual Meeting 2020

    “...Circadian melatonin signal disruption by exposure to artificial light at night promotes bone lytic breast cancer metastasis"

    https://cancerres.aacrjournals.org/content/80/16_Supplement/LB-212

    A good plain-language summary is here:

    https://foodforbreastcancer.com/

    Bottom line: Sleeping in a very dark room may help prevent mets. Melatonin supplements If needed may be a good thing.

  • olma61
    olma61 Member Posts: 1,026
    edited October 2020

    Studies have shown that women who work night shift have a higher incidence of breast cancer and now this.

    I am definitely in this category...staying up all night , falling asleep with tv on, laying in bed restless looking at my tablet, etc.

    Have been like this for years prior to diagnosis. Just recently was able to adjust my sleep schedule after another year of tossing and turning til 5 am. I am holding on for dear life, holding on to being able to fall asleep in the dark and wake up at sunrise.

    And with that...good night