Starting Immunotherapy and Chemo Tomorrow
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I should have said Keytruda was first most recommended for High MSI, but now, if used with Lenvima, it's recommended for non-High-MSI as well. Yay! I feel like we're all going to be on Keytruda eventually. I'm still upset I missed out on potentially getting it for free and without even an insurance battle in a current study doing frontline Keytruda with Carbo Taxol. My local onc cannot keep up with the minute by minute developments. I think we're currently experiencing the most positive changes in MMMT/GCS survivorship (and its quarter cousins serous cell and clear cell endometriod adenocarcinoma) in over 4 decades. Do you know survival for uterine cancer overall has gone down 6% since 1975, as published in AARP Mag? All other major cancers have increased their odds, some massively. (See, i.e. the guy who gets all the ads, money, and love--metastatic breast cancer!) Uterine cancer receives the lowest funding too. There is no screening for uterine and ovarian cancer. This is unacceptable.
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I am MMMT/GCS. Unfortunately, Keytruda and Lenvima are only FDA approved for second line which insurance companies will use as an excuse not to cover in first line. I did know that we are doing poorly with uterine cancer, particularly for for many types of tumors. There are a lot of clinical trials happening now and I hope we have more options in the future, but this will take several years.
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Did your insurance cover it for your frontline use? The fact that it's being used at all, regardless of who pays for it, is a sea change. Considering I believe it wasn't even covered for second line use for uterine cancer only a few months ago, I'm still very encouraged. I don't want to pay for it out of pocket (I heard 150K per year). Also, of course I have to balance the side effects with the potential gains; I'm 1A with positive washings. Still, all in all, extremely hopeful; thanks so much for sharing & I hope you continue to tolerate all your drugs well.
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No, insurance did not cover.
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I'm very sorry. That's not right. Would you share how much it costs per infusion or pill to help me plan?
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Costs vary greatly. You should request an estimate from whoever will provide this.
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Best of luck to you.
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I am doing great. 3 out of 6 done with just some fatigue so far. Fingers crossed!
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https://www.cancercenter.com/clinical-trials/endometrial-ruby
This is the trial I’m participating in. Check it out and see if you might be eligible. I became eligible due to my recurrent status. It is also available as a front line for advanced EC. I am not as well informed as most people here, but I hope this is useful information for someone.
Ginnie
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Thanks!!!
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It appears I'm not eligible, as I'm low stage (1A) and not recurrent, but thanks again! I am trying to figure out what to do next, after carbo taxol and brachytherapy.
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I was not willing to take the risk for a placebo trial.
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Good morning Teresa,
I used to live on Wingfield Lane in Florida ;-)
I understand, you have to do what’s right for you. I was a bit hesitant at first because I afraid there was a possibility of not receiving chemo.
I am participating in Part 2. The chemo combo of Carboplatin/Paclitaxol is still given to everyone. That is still the gold standard of treatment for someone with my dx and would be unethical to withhold it. Only the immunotherapy, Dostarlimab concurrent w/chemo then dostarlimab + niraparid starting with “maintenance”, could potentially be a placebo.
When I dug down into the the literature, I would actually have a slightly greater than 50% chance at receiving the real deal. Another bonus, in my mind anyway, is more frequent monitoring via bloodwork and scans. Anything to do with the study is paid for by the study. None of that even goes through my insurance.
Ginnie
*oops, I see now that you are already receiving immunotherapy + chemo. In the immortal words of Roseanne Rosannadanna, “Nevermind”. I didn’t realize that I was only looking at the top of this page, not the top of the thread. 🥴
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Teresa, you may have said here or on Facebook, if I missed it, sorry--but what stage were you? Also, your story is so compelling, absolutely unique, and groundbreaking--would you do your fellow posters a great service and fill out the About Me section on your profile? Click on CMB's excellent one to see an example, which includes items such as how you were diagnosed; your staging and pathology; your treatment; what you've learned; and what you would do differently. Thank you very much.
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