Are you currently (or have you been) in a Clinical Trial?
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Good to hear that things are turning around for you Gumdoctor
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EV11 Elizabeth - Sounds like you have had a busy holiday season with screening to start DESTINY. I hope you were able to enjoy the holidays despite the appointments. Hope you get the trial drug and that it works fantastically for you.
Thanks for the info about WindMIL Therapeutics work. Interesting!
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Here is another interesting approach- researchers have found that injecting FDA-approved influenza (Flu) vaccines into tumors elicits a systemic immune response that synergizes with immunotherapy to eliminate tumors (TNBC and others) in mice. Because the flu viruses are already FDA-approved, they could enter clinical trials soon.
https://www.sciencedaily.com/releases/2020/01/2001...
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Cure-ious, the whole viral vaccine approach is something that I find to potentially hold a lot of promise. I hope trials start soon.
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Interesting!
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EV11, isn't this the DESTINY drug? Looks like it has accelerated approval.
https://www.targetedonc.com/news/trastuzumab-derux...
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does anyone know when one of the oral SERDS will get approved? Any rumors out there
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Nkb, Ive been wondering the same thing. Elacestrant is in phase 3 trials and the results at SABCS seemed positive.
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My cocktail of Abraxane, Keytruda and Celebrex didn't work. More progression in my lungs/chest though my brain mets decreased.
Talked about DS-8201a DESTINY trial but I was scared off by the two treatment-induced deaths from interstitial pneumonitis. Since my lungs are not too good, I didn't want to go that route. Also, it seems to be for HER2+ and I'm Her2 equivocal.
Discussed Sacituzumab govitecan trial but for some reason I can go from the DESTINY trial to the Sacituzumab govitecan trial but not the other way.
Going to give Abemaciclib + Exemestane a try for now. It'll be nice to be back on oral meds.
Hugs, Susan
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SusaninSF~ I don't normally follow this thread, but I saw your name pop up and wanted to say hi. So very sorry to read that your current cocktail has failed you and you have progression to lungs. Decreased brain mets is at least a bit of a silver lining. I am finishing up my 7th month of Piqray/Fas and am so grateful to you for being a part of the trial and sharing your experience. Happy for that you will be out of the chair on your new tx. Best wishes, Jo
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I don't know if any of you have seen this https://www.dailywire.com/news/british-scientist-may-have-found-cure-for-cancer-by-accident?itm_source=parsely-api%3Futm_content%3Dnews&utm_campaign=daily_shapiro&utm_medium=email&utm_source=housefile&_hsenc=p2ANqtz--7-NaYxs0mSLR-4Qd4MuFNED6eOHGZz1wS9oSeoi9KhZTV1R0CxPNgTBxVxSZD0pLviiY5LZliSZkooRxAW6MF7CpGjA&_hsmi=82322285
It certainly looks promising. Let's hope and pray that it is the magic bullet.
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Jo,
So sweet of you! Thank you for your kind words!
Hope you are able to stay on the Piqray+Fas for a long time. I see that you had a good, long run on Ibrance.
Hugs, Susan
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SusaninSF- I really hope that the abemaciclib/ exemestane works well for you! Great to get back to oral! Abemaciclib really helped Luce with her lung Mets and she is still on it. glad that your brain is better !
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Yes, glad to hear of improvement for brain mets, Susan. Rooting for you on abemaciclib + exemestane!
I have not updated my “stats” below. Had progression on Xeloda, tried eribulin, tried Doxil. Now looking at these two trials as a way to get neratinib + fulvestrant (Faslodex) without a huge fight. Would love to hear any thoughts.
https://clinicaltrials.gov/ct2/show/NCT01670877
This one has the two drugs I want, but it is not at my cancer center, and I really like my cancer center and my onc there.
https://clinicaltrials.gov/ct2/show/NCT01953926#eligibility
This one is at my cancer center, but it has an extra drug I see no need for (Herceptin).
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Wow, Shetland, that is a tossup. Unfortunately, I haven't read enough of these clinical trials that closely to figure out what's better in one versus the other. The only thing I did see is I think the second one listed (when you go on the tabular view) talks about lobular vs ductal. Does that mean that they are just collecting info about that or does it mean that they are really focusing on it?
If it was me, I might lean slightly towards your current cancer center and onc, just because you have been happy there. Shifting to another center, albeit a really excellent center too, for me would exacerbate my already high anxiety. I would review the drugs with my current onc and see what she says about the additional drug.
Good luck in your decision. I will be following what you decide for sure, as will all of us lobular gals!
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Here is a link to a research area summary in Nature, which is not immediately action-able but shows what the field is doing to try to figure out how to make immunotherapy work for everybody. They find that the presence of B cells (together with T cells) in what they call "tertiary lymphoid structures" is the thing that most strongly correlates with a robust response to checkpoint inhibitors. People who have B cells in these structures before treatment tend to be the best responders, but they are also find that some drug combinations can promote the formation of these structures in people who did not have a lot of them, so this is becoming an area of intense research. Although immunotherapy is outside the scope for those of us with ER-positive cancers, hopefully they can figure out all this stuff, and sooner rather than later... Nevertheless, it is really good progress..
https://www.nature.com/articles/d41586-019-03943-0
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And, as many already have seen, another report identified a subtype of T cell that can recognize and kill a wide variety of cancer cells, possibly by binding to a metabolic protein or metabolite that is present on most or all cancer cells but not on normal cells. This could allow for an off-the-shelf (and much cheaper and faster) type of CAR-T therapy, where this T cell is enriched and used to fight all kinds of cancer, super stuff!
https://www.nature.com/articles/s41590-019-0578-8....
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Thanks Nkb and ShetlandPony!
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I started the Destiny04/DS8201 trial for HER2 'low' last week.
The general eligibility criteria and timeline, and the sponsor's strict adherence to the criteria made it incredibly difficult to enroll...but I did. At the last minute (Wednesday Jan. 15 they decided they wanted a fresh biopsy--NOT to re-confirm HER2 eligibility, but rather to give them a "more fresh specimen" for their genomic and other testing...so at the very last minute I had to meet with a surgeon on Friday, and beg to get on the next Monday's OR schedule...Monday was day 27 of the screening process, and I had to be randomized into treatment AND start therapy by day 28. They wouldn't randomize until biopsy tissue was in hand. So my 2:45 pm PST surgery was communicated to them as successful at 7:00pm EST and they left message at the clinic as to my arm.
So less than 18 hours after surgery, I was in the clinic, randomized into the SoC arm (we decided on taxol) and I got my first dose that morning.
I'm not sure how much was the taxol, how much was post-anesthesia ick, and how much is the massive amount of GI mets that are causing me near-continuous partial small bowel obstructions, but OMG... I could not get nausea/vomiting and diarrhea under control for a few days...then, I had a port placed, more anesthesia, more antibiotics, more nausea. It was quite a week.
I'm only today starting to feel a lilt bit close to normal...I get my second dose of taxol tomorrow. Ugh.
Elizabeth
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I am sorry to hear it is so hard on you Ev11. I really hope it starts to get easier.
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Elizabeth,
Thinking good thoughts for you with the Destiny trial -- and also that you soon feel better. Sounds like that was quite a whirlwind last week, so you need some wind down now for a bit!
Good luck on this one.
Bev
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Elizabeth that's just awful! I hope these side effects continue to a abate and disappear. In the meantime I hope that you have a family member or friend waiting on you hand and foot. Feel better soon.
Katty
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Elizabeth hoping this works for you. Well done for clawing your way on to this trial just in the nick of time - you are my hero.
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Elizabeth, oh my gosh, what an ordeal! I am sad to hear of your suffering, and sending all good wishes that you feel better and better each day. That last-day slide onto trial home base is incredible. You rock. Superhero with a big EV on your shirt! It must have been exhausting. What is “SoC” arm?
As BevJen suggested I reviewed the proposed trial drugs with my onc. She explained that there is some data (in mice) to suggest that adding herceptin to neratinib adds benefit. And she convinced me that it is not likely to add too much in the way of side effects. (If she ever wants a new career she can sell cars!) And as much as I hate the thought of Faslodex shots (I did them for four months before) I think I really need to do everything I can right now. If we block Her2, the cancer can’t just go back to using ER, that’s the idea with faslodex. My onc thinks the three-drug trial is just a newer version of the two-drug trial. Bottom line, I will proceed with the phase II SUMMIT trial at my cancer center, and get neratinib, herceptin, and fulvestrant. This arm is for ER+ Her2 mutated metastatic breast cancer. I have been off chemo too long, and my onc is concerned, so we will move as fast as possible. I am oddly excited to go on this trial.
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Shetland,
Does this mean that you won't be doing local liver treatment at the present time? I think this seems like an interesting trial, so wish you much luck on this. Will be watching to see how it goes.
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Shetland- nice to have a plan. I know what you mean about going back to fulvestrant injections- I don't want to either. I am also curious if you are doing the Y90 concurrently ? I super hope that an oral SERD comes along and you can switch. The breast cancer podcasts with Neil Love have been talking about HER2+ a lot in the last several months and Neratinib.
I am not sure which direction I will go in for next treatment. PET is on Thursday, MO appt Tuesday. I have not had my PIK3 checked so may do that- I fear that it is Xeloda for me. What else could it be? (TMs way way up- )
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Well, the plan was to do Y90 mapping this week and radioembolization next week, which is during the time it takes to get into the trial. But today my onc is questioning local treatment because the MRI shows several lesions, not just the two presumed chemo-resistant rogues from my CT a couple months ago. And IR advises against treating a lot of tumors at once. Also my onc would be in favor of treating a tumor if it meant potentially going without the stent, but in that location we see and biopsy only scar tissue. She says no harm in doing it, but it puts me through the procedures and only treats one or two tumors. So maybe just go to systemic treatment.
I did ask if I could do anything to get the oral SERD, say, give them my firstborn child, but it is not available. I can’t see the trial people switching to it mid-trial, either. My tumor genomic test results have been sent to the study people, so they can see that I have a Her2 (ERBB2) mutation that qualifies for the trial. That is the first step. (It is not Her2+ aka Her2 amplified, but mutated. This is relatively common in Her2 negative metastatic ILC.)
Nkb, Xeloda was my favorite treatment and I had two years of NEAD on it. I would have been happy to continue on it.
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Elizabeth,
Congratulations on getting into the trial! Sorry to hear about the SEs.
So you are only on Taxol at this point? If you were randomized to SOC, doesn't that mean you will not receive DS-8201?
Hugs, Susan
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Shetland,
Good luck on making the decision about local treatment. Another thought -- you could perhaps zap the resistant little buggers with ablation and just leave the rest for now and see how they respond to treatment? Or zap at least one of them so you have something to meet RECIST standards (if that's required for your trial)? From my experience, that would give you about a 2 week recovery or so. But if that interferes with your trial, then you should move ahead with that if you get in (which it sounds like you will.)
I know you don't want to do the faslodex, but I've actually found it quite do-able, and I actually enjoy the break from taking another little pill (which I did for many years with the letrozole I was on from 2006-2019.) Of course, I have pretty good padding on my bum, but I think part of the trick (and this stuff is at some point on the Ibrance thread, I think) is walking after the shots (I walk all over the hospital complex just to get the darn stuff in my system) and then icing the spots for a bit afterwards. My injection nurse has those icing packs at the ready for me, and hands them to me as I leave my injection. I also follow all of the tips that others posted -- see Ibrance thread -- and they've helped me tremendously.
Good luck with all of this. I know you'll be happy to get on treatment.
Bev
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We're sending all you amazing women tons of encouragement. Please, if there is anything we can do, please reach out
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