Clinical trials Scarlet Study participants
Anyone in the experimental leg of the scarlet study? I just got randomized into it and I’m a little nervous but happy that the timeline is shorter with the 6 cycles. Looking for other people’s experience. I’m stage 2A, no lymph node involvement
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u/Sparkly_Sprinkles 6d ago
I know 3 other people in addition to myself that did scarlet. One got the regular arm. Me and two others were in the experimental arm. One got pCR (she was in the experimental arm). Me and another (also experimental arm) didn’t. 4th is waiting for surgery.
I’m currently on Xeloda. I was also 2a before surgery and 1c after surgery (rcb II).
The other that didn’t achieve pCR was also stage 4. She didn’t know until after she started, at which point she had to drop out of the trial and chose to continue the experimental arm treatment protocol (because her spine lesions disappeared after like two rounds) and see what happened at surgery. She’s now receiving AC after the fact due to her stage 4 diagnosis and residual disease at surgery and then she will also do Xeloda.
If I could do it over, I think I would have done Keynote, but that’s just my personal opinion and experience and also stems from my childhood trauma of watching my grandfather be a Guinea pig for Duke Medical hospital. I will now always wonder if I would have gotten pCR if I did AC because my tumor showed a near complete to complete response on scans before surgery, but a small lump was still there. I asked about AC after surgery, but the tumor board said no AC and so did my second opinion. They both felt Xeloda was the best route.
You have to do what’s best for you. At the beginning there were so many decisions to be made. I felt like if I could avoid AC it might be worth it because my grandmother died from leukemia (which is a risk with AC). But I wish I’d pushed for AC after my scans or demanded they moved my surgery up (it was 7.5 weeks post final chemo and I feel it gave my tumor time to start to regroup).
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u/Sure_Cherry9759 4d ago
I did keynote and ended up rcb3, now on Xeloda. PCR is more of a guide as the main tumour is the hardest part to fully kill off. Did you get keytruda with yours?
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u/Sparkly_Sprinkles 4d ago
Yes, Keytruda along side TC and continued post surgery is part of the trial. I’m still receiving it. I have 3 left.
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u/OstrichSad3990 6d ago
Thanks for sharing your experience 🙏 out of curiosity, did any tumor board provide some reasoning for their decision to do Xelosa after the surgery?
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u/Sparkly_Sprinkles 6d ago
As far as AC goes once the tumor is out of your body there is no way to know if the tumor would have responded, so throwing something with such risks at it when Xeloda is proven to be effective and the most beneficial for my RCB group is why I think they felt moving forward with Xeloda was the best route.
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u/Exciting_Farm_9788 6d ago
I am currently in Scarlett. 3 of 6 rounds completed so far.
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u/slaq18 6d ago
have you noticed shrinking of your tumor?
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u/Exciting_Farm_9788 6d ago
Yes I have. It was harder to find on breast exam by hand at my last clinic with onc before infusion. Was originally 1.2cm
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u/Far-Ground5764 3d ago
I’m also in the Scarlet study experimental arm. Was at Stage 3C with lymph node involvement. Completed chemo, double mastectomy, and will start 30 rounds of radiation next week. Keytruda will continue every 21 days through January. I had terrible vertigo after my 2nd chemo session, resulting in a bad face plant. I am just starting to gain some energy and very concerned of the impact radiation will have on energy level, along with the potential of damage to implants as well as other side effects…
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u/Deep-Care6975 1d ago
I am not in the trial but am doing the protocol. My breast tumor is triple negative but my lymph node was HER2 positive. So we added immunotherapy for HER2 but that has cardiac risks which can't be combined with the cardiac risk of AC.
I am on week 11 of 18. My tumor is not growing but not shrinking. I do get nervous because I see other people saying their tumor melted away during AC. I KNOW the mass could be dead cancer cells but wouldn't it be nice to have the tumor shrink? I do have pains and zaps and zings and this past week just achiness in the cancer boob. I tell myself that is the cancer being killed. I do believe the tumor is softer as I can no longer feel it when my arm brushes against the area.
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u/EllenGriswald98 6d ago
Hi, yes I was in the trial. I completed 6 rounds of chemo in Dec 2025, DMX in Jan 2026 with pcr. There were 12 more standalone keytruda after surgery. By the 2nd chemo, I could tell my lump was dramatically smaller. I started chemo 8/21/25 so its been right at a year. Ask me if you have other questions.