Are you currently (or have you been) in a Clinical Trial?

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  • MargaritaMS
    MargaritaMS Member Posts: 199
    edited August 2020

    I’m on month 14 of treatment with Keytruda + Herceptin. I switched to this regime after progressing on Kadcyla and previously progressing on just HP. I’ve had mets in my lumbar spine and psoas muscle, both of which were treated with SBRT and I’ve also twice had Taxol and Abraxane, which took care of my liver and lungmets. My first PET after starting on Keytruda showed NEAD and all my PET scans since have also been NEAD. I’m certainly not at the point that Barbigwire has achieved - of seemingly being cured - but after five years of treatments for MBC, I’m super grateful for the response I’ve had to Keytruda. Also, I’ve (so far) been spared the scary side effects that some have experienced on immunotherapy.

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  • Simone80
    Simone80 Member Posts: 988
    edited August 2020

    Barbigwire and MargaritaMS, your stories are certainly uplifting and give hope. Thank you for posting.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2020

    Anybody here been on a trial with bintrafusp alfa?

    Watch for this clinical trial at NIH. It is waiting to get final approval and won't be available for several months due to covid. I have been in contact with the author/PI who has just moved to Ohio State. The new PI said I may qualify when/if the time comes.

    NCT04296942
    BN-Brachyury, Entinostat, Adotrastuzumab Emtansine and M7824 in Advanced Stage Breast Cancer (BrEAsT)



    Correction- this is not the trial I was in contact with NIH, but a different one by the same PI. This one is for Her2 + which I am not. They are still waiting for an NCT number for the one I can qualify which will use a CV301 vaccine with M7824 and an anti-IL8 receptor.

    Dee

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  • BSandra
    BSandra Member Posts: 836
    edited August 2020

    Dear Barbigwire, were you stage IV those 4.5 years ago? If so, that is extremely inspiring... Saulius

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  • moth
    moth Member Posts: 4,800
    edited August 2020

    Saulius, you can read about Barbara's dx & treatment - and the hospitalization at this link . Highly recommend. https://www.cancernetwork.com/view/barbara-bigelow...


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  • jtamayo3
    jtamayo3 Member Posts: 1
    edited August 2020

    Hi,


    Does anyone have any info on the status of this trial? I heard it halted, but I'm not sure if anyone else heard that it was halted (or why). Thanks!


    Joel

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  • moth
    moth Member Posts: 4,800
    edited August 2020

    Joel, which trial are you referring to?

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  • Weareonthecusp
    Weareonthecusp Member Posts: 22
    edited August 2020

    Hello everyone, just wanted to finalize the last post I made about the trial and my next steps. As it turns out I actually was already on the ttk inhibitor and at this point they have no trial to offer but I was kinda leaning towards trying some.chemo for a bit anyway. I need some shrinkage. Sob has gotten bad and I ended up with bad chest pain which led to hospital stay of a couple days. They didnt seem to know what caused it and assume the lung mets. I think more like pleurisy without fluid buildup. Anyway, I am going to revisit xeloda as I had it in 2017 and didnt recur on it at that time. I was still stage 2 then. I didnt go stage 4 until months later. So hoping this will last for awhile. I also asked My MO to look into compationate use of a drug called leronlimab from the states to see if we could get it in Canada. If successful I will post.

    As always, my thoughts are with everyone.

    Kathy xo

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  • NorCalS
    NorCalS Member Posts: 288
    edited August 2020

    Kathy/weareonthecusp:

    Please keep us updated on Leronlimab. This may be an immunotherapy with less severe side effects. Hopefully, you are able to receive the treatment.

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  • BSandra
    BSandra Member Posts: 836
    edited August 2020

    Thank you dear Moth! Uh, sorry, I did not know Barbigwire was famous Barbara Bigelow - I follow her blog for 3 years now and know her story by heart:) Such an inspiration and advocate (she does mountains at Metavivor)... Saulius

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  • BSandra
    BSandra Member Posts: 836
    edited August 2020

    I got this link from one very active "silent" member on these forums: https://www.tandfonline.com/doi/full/10.1080/14712... Article comes with very comprehensive decision making chart (they call it "immunogram") for IO in mTNBC...

    Saulius

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited August 2020

    Happy to report that, though I had a small progression two scans ago, my latest scan last Monday was stable. For now, I will be able to stay on Trodelvy (Sacituzumab Govitecan). Started my 9th cycle last Thursday. Still keeping my eye out for the next best treatment but have more time now. Also good news that my mouth sores have gotten much better!

    Thanks to everyone for the supportive energy!

    Hugs, Susan

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2020

    Susan,

    Stable is great! I'll take stable any day. That's wonderful, and so happy that you are doing better on that drug and also that you have time to explore other options. Woo hoo!

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited August 2020

    Awesome Susan!!!! WHOOO HOOO

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited August 2020

    yay Susan

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  • Simone80
    Simone80 Member Posts: 988
    edited August 2020

    Yay Susan!

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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2020

    Susan! so happy for you!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    Susan, phew!!!! wonderful news!!

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    I was just reading that nearly HALF of MBC cancers have low HER2 expression (IHC 1+ or 2+), or develop some level of HER-2 expression as they mutate to resist endocrine therapy, and therefore many of us could be sensitive to the HER2-ADC drug Enhertu that Teresa is taking in the phase 3 DESTINY04 trial

    https://clinicaltrials.gov/ct2/show/NCT03734029

    https://www.curetoday.com/view/her2-mbc-destinybre...

    The idea would be to sequence these drugs in after cancer has become resistant to I/F and before moving to systemic chemos, because the drug carries a chemo payload but is targeted to cells with HER-2 proteins on their surface, rather than hitting all cells in the body. The drug also leaks out of killed cells to attack surrounding HER-2 negative cells in the tumor. As she mentioned, based on the promising results so far, a new phase 1 trial has also been started with a HER2-low arm that combines Enhertu with immunotherapy.

    https://clinicaltrials.gov/ct2/show/NCT03523572

    .- including many sites in europe

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2020

    Cure-ious,

    Thanks for posting that info. I recently had a zoom call, with my metastatic bc discussion group, with a locally well known MO. She suggested that if someone progresses, they get a new biopsy and a new genomic test. That way, the docs know what they are dealing with, and can suggest newer drug combos/clinical trials just like this one.

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  • VZP7
    VZP7 Member Posts: 2
    edited August 2020

    Hi! I just wanted to ask about the drug TRODELVY and what was your experience with it in regards to side effects? Also, was hair loss a definite side effect? Thank you so much!!

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  • SusaninSF
    SusaninSF Member Posts: 1,213
    edited August 2020

    Thanks for the many celebratory messages for my stable scan! Only other metastatic people can understand how being stable is something to celebrate. Your messages really warmed my heart and made my day!

    VZP7, I have found Trodelvy to be very easy to tolerate. I did lose all of my hair but I started off with very little after Letrozole and Abraxane treatments. Cold capping is unlikely to work for this kind of treatment. That being said, everyone's response is different, you may not lose your hair. From the first study results looks like 35% (38/108) got Alopecia. I had terrible mouth sores before taking Trodelvy and they have gotten better. Have more energy than I had on previous treatments.

    Like Enhertu whose mechanism is described by Cure-ious earlier, it is an ADC so the chemo delivery is targeted. Trodelvy is so far only approved for TNBC but the TROPICS 2 trial that I am on is for ER+/HER2- patients. My MO first suggested I go on Enhertu but I chose not to because I have a lot of lung tumors and pleural effusion. One of Enhertu's side effects is ILD (Interstitial Lung Disease). Two trial participants died of ILD. That being said, they are now very proactive about monitoring for ILD.

    Hugs, Susan

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited August 2020

    VZP and Susan...isn't the tropics2 only allowing HER2- that have not been treated with more than 2 lines of chemo...that includes Xeloda (oral chemo)? Susan you said you got terrible mouth sores..this was a MAJOR issue for me on Ibrance, but just curious you said you had them BEFORE Trodelvy.....but then it sounds like that actually gave it to you? Did you have them prior or no?

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    So I want to circle back and add some comments on the gut microbiome and immunotherapy paper that was recently published in Science.

    They identified three bacteria strains that activate T cells to go fight cancer, which are important to have in your gut in order to have a good response to immunotherapy: But we already had heard about bifodobacteria from papers published several years back, so this part is not totally new

    What is new is that they show why these specific bacterial strains work- each of them produce a purine (metabolite/small molecule) called INOSINE And it is the inosine that is stimulating the T cells to attack tumors.

    here is a summary of the paper: https://www.sciencedaily.com/releases/2020/08/2008...

    the study was in mice and they need to show it works the same in humans, however inosine is used already as a supplement over the counter for various uses, including its anti-inflammatory activity. And anti-inflammatory NSAIDS like Celebrex are used similarly to boost immunotherapy.

    No idea if inosine would act redundantly to Celebrex, or if they all would synergize and work together, as in the more the merrier- anyway, it's progress!.

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  • moth
    moth Member Posts: 4,800
    edited August 2020

    cure-ious, thx for reviewing this topic again. I hadn't heard about this potentially amplifying link between probiotics (and nsaids) and immumotherapy. I recently started drinking a vegan kefir because I'm on prophylactic low dose antibiotics but maybe I should be more serious and get probiotic capsules. Thx again

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    Susan,

    You bring up a good question- will both of these new treatments be available to us, or would we have to choose one?

    Enhertu: targets cancer cells that express HER2 protein (high or low) on the surface and carries a topoisomerase I inhibitor chemotherapy payload called DXd

    Trodelvy (sacituzumab govitecan): targets cancer cells that express the TROP2 protein on the surface and carries a topoisomerase I inhibitor chemotherapy payload called SN-38

    in general drug designers are choosing chemo payloads that we would not have seen before (like older chemos deemed too toxic to take directly) and thus our cancer cells would not already be resistant to.

    However, these two drugs are hitting the same enzyme (topoisomerase I), although with ostensibly different mechanisms because they are not identical chemicals, did they discuss that with you, ie, if you would be able to take both eventually or have to choose one?

    If we all have to choose, then we need to study up on the different SEs of these drugs, as you did...

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    moth, its very confusing- on paper one can imagine all sorts of interactions, good and bad or neutral, between an nsaid and a pro- or anti-biotic; we need for trial data-

    Except that there is a clear benefit to adding an NSAID to immunotherapy, that is the basis of the immunotherapy trial with EP4 that Kattysmith and Wearonthecusp were in ( and both were responders!)

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited August 2020

    How do we get immunotherapy (checkpoint inhibitors) to work for all of us?

    Here are some of the ideas that are being tested or were published this year:

    1- Add chemo or radiation or a vaccine- this is the basis of most clinical trials in this area..

    2-Add EP4, Celebrex or another NSAID of this class of COX2 inhibitor.This is being tested in clinical trials

    https://stm.sciencemag.org/content/11/497/eaax9566...

    3- Treat with a synthetic IL-18 cytokine that will act directly on cancer cells in the tumor and not get sucked up by decoy receptors in the cancer microenvironment (working its way to clinical trial)

    https://www.statnews.com/2020/06/24/engineering-im...

    4- Inhibit TREM2 using a monoclonal antibody (still in pre-clinical testing)

    https://www.sciencedaily.com/releases/2020/08/2008...

    5- Enhance your gut microbiome or perhaps supplement with inosine (only tested in mice)

    (metformin is reported to increase inosine levels, so there may be overlap between these two compounds)

    https://science.sciencemag.org/content/early/2020/...


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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited August 2020

    Curious I just read info a week ago or so on FB that says exactly the opposite about Probiotics and immunotherapy that it actually can prevent the immunotherapy from working. One woman in the group named Esther said this actually happened to her while on Immunotherapy.Here is some info I found on FB :

    "There is a recent study that shows probiotic supplementation is correlated with a less diverse microbiome and a poorer response to immunotherapy. Those in the study with a fiber rich diet had a more diverse biome and better immunotherapy response." - they did not provide a link for. the study...but I found this:

    https://www.curetoday.com/view/highfiber-diet-enhances-immunotherapy-response-study-finds?fbclid=IwAR1j4tIvlCoZ4eNezhpp-r8RPbKwcLfsMLEIzgpZt9s879Rd6nTYdCY7u44

    and this:

    https://www.medicalnewstoday.com/articles/324886?fbclid=IwAR0oJx9QJY18P20IhicUrusR9yQdchrQU3dfy2vI4ny1GvnixcBoVcjNg5w#Manipulating-the-gut-microbiome


    Cure-ious also thanks for posting all that info! I am going to look into Isonine..... I do take Metformin its the one thing I stuck with from Janes protocol.


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  • Andish
    Andish Member Posts: 20
    edited August 2020

    Hi Nicolerad

    You are currently tripple negative right?? Or Er positive . What treatment are you currently undergoing?

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