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  • BSandra
    BSandra Member Posts: 836
    edited June 2021

    Dear Olma, yes, I have seen that presentation and have these slides:)P BTW, I have also posted the trial Dana Farber is designing for a HER2+ mbc CURE - but no one reacted:) That comes from SABCS'20. Reposting:) People... there are cures in stage IV already, just they are not proved - time is needed. Drugs are super effective already, now they have to be used wisely and first "official" cures will come... Saulius

    image

  • JoynerL
    JoynerL Member Posts: 1,393
    edited June 2021

    I have an odd question: Early on (2017-2018), when I was on Ibrance/Faslodex, I recall that the folks on the Ibrance string were mentioning/quoting a revered oncologist whose name was "Saulius" or at least something close thereto. Is that you, Saulius, or am I just totally misremembering? I lost sight of that onc visionary and would love to be reminded of whom he(?) was, anyway. Thanks!!

    All of this makes me wish I were HER2+ (I guess)!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    very interesting! Thanks, Saulius. Looks like they would hit the cancer with three systemic therapies, then local, then another systemic. Would they recruit only oligo patients or include those with more widespread mets?

    Moth, unfortunately, made a good point. HER2+ is only 20 - 25% of all breast cancer and then metastatic fewer than that and de novo an even smaller subset.

    Although anti HER2 therapy has proved useful for a few other cancer types, such as gastric, and now the HER2 low breast cancer studies...I think the original hope was that it would be more widely useful when the HER2 growth factor was first discovered.

    But “ precision medicine “. does seem to be the answer, even though we hear frequently about research that could lead to THE cure for all cancer, nothing ever happens. Like that story from Israel a year or two ago and alsoimmunotherapy . Just saw this one the other day, hope it progresses beyond mouse studies - https://medicalxpress.com/news/2021-05-immunotherapy-revolutionize-cancer-treatment.html

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    And on the topic of further personalizing breast cancer treatment, here is a discussion of exactly that. Creating smaller sub-categories based on mutations other than just hormone receptors or lack thereof -

    https://perspectives.esmo.org/latest-edition/slider-content/breast-cancer-treatment-should-be-tailored-to-the-tumour-biology-not-to-its-hormone-receptor-status-alone?hit=some

  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited June 2021

    Thanks for this Olma...an interesting read.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited June 2021

    Olma - thank you for the link. Genetics seems to be the key if we can just learn the markers and targeted therapy. Several years ago when I was sharing my experience with DIY cold capping and how it worked ( how to rotate the caps in the cooler etc) she remarked that she that I was lucky being strongly ER+ and that there were drugs, but she was triple negative with no drugs to treat it. I did not say anything, but I did not feel lucky since estrogen is natural and neccesary even in small amounts after menopause. I wish for ways to attack the cancer without attacking me. This is the 3rd recurrence. Tamoxifen, AIs are all systemic. Do they really work? Would I be much worse off without them?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Bluegirlredstate

    I love the way you said “I wish for ways to attack the cancer without attacking me.“

    the truth about anti-estrogens is how much they wreck our bodies- osteopenia, joint degeneration, muscle aches, heart health, dryness-skin, eyes, vaginal etc. we suffer through because they often work.

    I am a little miffed when someone said, “at least it’s not chemo.” Yes-I do get to keep my hair and avoid some of the very harsh SE but hormone therapy takes a toll too. It’s not fun to have a golf ball size tumor in my liver, but I am thankful that my trial drug is working to keep the tumors from growing for now.

    Dee



  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Youre welcome ladies, glad you found the articles useful. Quick comment about hormone therapies- I started feeling worse when I began the anastrozole than I did for my six months on Taxol, Herceptin and Perjeta. And, I quickly put on weight in my midsection.

    I joke that the steroids in the Taxol infusion had me sohyped up so I “thought" I felt good...but seriously I was a fortunate one who didn't suffer that much on Taxol.

    Yes, hated the baldness and I did have fatigue and low Hgb. But..the anastrozole has me fatigued, achy, makes my hands almost useless at times, muscle cramping especially at bed time, etc.

    Tamoxifen carries a risk of uterine cancer, etc.

    Sure, taking a pill every day is easier than showing up for infusions, but it's still a systemic therapy that effects our entire bodies.

    If or when they perfect an immuno therapy that is a one shot deal, doesn't kill us and worksfor most or all of us — well, now, that will really be an achievement

  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited June 2021

    Not “breaking research” but the history of the Warburg affect on cancer cells. I read about this nearly four years ago when I was first diagnosed with stage 4 and have been on a keto regime ever since. I started a thread about keto on the site a while back with links to other sites and info if anyone is interested.
    https://www.reddit.com/r/ketoscience/comments/nto84d/cbs_this_morning_on_twitter_talks_about_otto/?utm_source=share&utm_medium=ios_app&utm_name=iossmf


  • BSandra
    BSandra Member Posts: 836
    edited June 2021

    Dear JoynerL, I am not an oncologist - just an ordinary guy from Lithuania who's trying to save his wife. But you know... if I could live my life again (I am not that old- maybe there's still time?:), I could be an oncologist-researcher - what an exciting (and horrible) field. Let's hope it will turn from "horrible" into "exciting-only" soon.

    Dear Olma, I am sorry I mostly post on HER2+ MBC because this is the field that is most important to my family. One thing I have to note is that HER2+ drugs (ADCs) are quite quickly making it into HER2low, as they get bystander/pan-inibitor properties. I think in a long term Her2low people will benefit from these drugs, and therefore Her2+ field is so exciting. There are stage IV people already in these threads who got NED on anti-her2 drugs, themselves being her2low (but having her2 mutation).

    Saulius

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Dear Saulius, please don’t apologize, your posts are very helpful and full of good information. And yes, you stay so well informed that you do sound like an oncologist! I am a HER2+ gal also - so all HER2 positive posts are of interest to me. Just the fact that the experts will discuss treating any of us with curative intent is very exciting. I wonder if the Dana Farber study has begun? I see Dr Winer mentioned the 77 patients, it seems to be referring to the planned study on the slide you posted

    Kanga_Roo - interesting article. I just happened to come across this paper a few days ago “Hyperglycemic Conditions Proliferate Triple Negative Breast Cancer”

    https://www.researchsquare.com/article/rs-520490/v1

    It’s a preprint so not peer reviewed yet and it’s just about cells in a Petrie dish but still interesting.


  • BSandra
    BSandra Member Posts: 836
    edited June 2021

    Dear Olma, thanks a lot for your kind words. It'd be absolutely great if anyone who "attends" Dana Farber, or anyone in Boston, or Massachusetts, or even USA, could ask what is the state of that "possible" trial or trials similar like these? Of course, usually I wait for half a year/one year after something was announced I write and ask. I wrote really to quite a few top oncologists around the world and, to my surprise, got every and each answer. Extremely kind and understanding people. As close to top developments as one can get - trial and clinic wise. Just give them concrete questions, and you'll get all your answers. So dr. Parsons and dr. Lin, you still have half a year until Saulius' letter comes!:)

  • BevJen
    BevJen Member Posts: 2,523
    edited June 2021

    Saulius,

    I have to echo what you've said. I've sent questions to a number of docs and they do respond, especially if you send very specific questions. They have always been kind.

    And I do have to laugh about when your next few letters will be going out!

  • moth
    moth Member Posts: 4,800
    edited June 2021

    Phase 3 trial: ultra high single dose radiation was superior to 3 SBRT tx for oligomets

    https://doi.org/10.1016/j.ijrobp.2021.01.004

    edit: oops ok for reasons I don't understand I can't get the link to work but I think if you copy & paste this into a browser it should work redjournal.org/article/S0360-3016(21)00006-7/fulltext

    "The study confirms SDRT as a superior ablative treatment, indicating that effective ablation of oligometastatic lesions is associated with significant mitigation of distant metastatic progression."


  • illimae
    illimae Member Posts: 5,710
    edited June 2021

    Moth, sounds like a good finding but I think the link is off somehow unless I’m the problem, which is entirely possible, lol. Would you mind checking, if you have time?

  • moth
    moth Member Posts: 4,800
    edited June 2021

    argh, I fought with that link 3 times and thought I'd outsmarted it with the DOI link instead but I guess not!

    I'm editing it now one more time...

  • BSandra
    BSandra Member Posts: 836
    edited June 2021

    Thanks Bev, it is very nice to see you back here!:) Also, an ASCO summary on her2 ADCs in trials for her2low - looks very very promising! Saulius

    image

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    That's great news for those with HER2-low MBC. The drug SYD 985 ( trastuzumab duocarmazine)already finished phase 3 trials for HER2+ (not low)and should be coming to market soon.

    https://www.fiercebiotech.com/biotech/dutch-biopharma-byondis-shows-promising-results-phase-3-trial-her2-breast-cancer-drug

  • LilyCh
    LilyCh Member Posts: 193
    edited June 2021

    "Tamoxifen treated BC patients showed a reduced rate of hospitalization and strikingly no fatalities for COVID-19. In vitro experiments confirmed a protective role of tamoxifen while an increased susceptibility to SARS-CoV-2 infection of ER+ cells treated with fulvestrant was observed".

    https://www.researchsquare.com/article/rs-598923/v...

  • GoKale4320
    GoKale4320 Member Posts: 599
    edited June 2021

    Olma61 - I loved the video about bones. I was so encouraged that I stopped by the gym on the way home to lift weights. I’m also increasing my walking. Thank you!



  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Oh, you’re very welcome! Happy to see this,

  • LaughingGull
    LaughingGull Member Posts: 560
    edited June 2021

    Olma61 and GoKale3420, which video is the bones video? Can't find it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    The link I posted was actually in the Bone Mets thread under Stage IV - here's the link on YouTube, might also be on lbbc.org


    https://youtu.be/YpFfLrITfEI

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited June 2021

    Thanks for Sharing that bone info. That was really educational and helpfu

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    YW and yes, I thought it was so comprehensive, whether for newly diagnosed or or “seasoned” metsters.

    By the way, have not seen Lumpie, the OP of this thread posting lately and her last activity shows as May 7th. Hope she is okay, does anyone know her

  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited June 2021

    Lumpie sometimes takes a breather for several weeks, just to recharge, so hopefully that’s what’s going on.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2021

    Lumpie, we appreciate you and this super-valuable thread!! Love to you!

  • Lumpie
    Lumpie Member Posts: 1,650
    edited June 2021

    You are so kind to be concerned. Doing ok here! Taking a bit of a breather, visiting some fully vaccinated family at long last, stopping off for some R&R and doing advocacy around access to health care. Plus sometimes I just get in a rut and feel like I read the same studies over and over ... you probably know what I mean ... though I did see something a couple of days ago I thought I should post. As soon as I find it among my billion emails, I will pass it along. Thanks, all! Take care and be well. -Lumpie

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited June 2021

    Glad you popped in Lumpie. I really appreciate this thread. Glad you are out there living life!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2021

    Yes, good to hear from you! Enjoy th well-deserved R and R , thanks for checking in <3.

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