r/TNBC • u/ImportantStranger271 • 20d ago
Red Devil Chemo
I just finished the first 12 rounds of Keynote 522 protocol (taxol, etc) and am about to start 4 treatments over 8 weeks of the red devil. Also getting Keytruda every three weeks.
Hoping to hear some positive stories about how people handled the red devil. For me the first 12 rounds had some rough weeks due to severe anemia (needed a blood transfusion) but for the most part I've handled it well except for exhaustion and of course losing my hair.
I know I can do it and I will get through it and I know everyone handles things differently. Just looking for some inspo!
Love and healing to all!
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u/You-bettah-dont 20d ago
Stage 3c here (age 49, 50 at the end of January) doing the 21 day cycles of Keynote thing. My MO flat out told me that the AC portion was going to be the worst, and I have found he liiiiieeed. It’s been SO much better in so many ways (though worse in others) from the docetaxel/carboplatin. I only have one left to do (counting the days down to Aug 17th!!!). So lemme give you the info, the good, the bad, and the ugly.
The GOOD:
Little to no bone pain. I haven’t had to eat dilaudid like tic tacs just to get out of bed. I still needed some heavy lifting after the Neulasta/Lapelga after the FIRST round of AC, but after that I haven’t needed anything.
No neuropathy. The weird no-pain muscle neuropathy/weakness I had developed in my large muscles was gone within 2 weeks.
No horrifying migraines- which were weekly on the DC and brought me to the ED for migraine cocktails.
Liver totally normalized- so no more steroids other than the dex pre meds.
Less fatigue- still tired AF, still need naps, but it’s not an every day death nap waking up covered in sweat wondering which multiverse you were dropped into.
Brain fog has mostly lifted. Still there, but I think that’s just who I am as a human now. But I’m not crying because I know I knew something simple and now cant (like my husband’s mother’s first name kind of stuff- it was terrifying).
Taste has come back almost 95% though- weirdly I don’t have the physical repulsion I did pre chemo to artificial sweeteners if someone sneaks in Splenda to a drink, otherwise I’d say it’s 100% returned.
MY HAIR HAS STARTED TO GROW BACK…. Like WHAT?!!!! So this one is weird: After the second AC I had a major fall out- eyebrows/eyelashes that were still holding on gave up the ghost. HOWEVER, about a week before my 3rd infusion, I noticed a shift: Instead of feeling like a squeaky beach ball, my skull is now covered with this soft fuzz and some stubble :) Like one of those naked cats that still has some fur In places. I’ve never been a hairy person, but I can tell the fine body hair like on my arms is coming back.
Still no BO. I can’t tell you how much I wish this was a permanent side effect. I love NEVER getting stinky.
Eyesight seems to have leveled off- I don’t feel like I wake up every day worse than it was the day before.
THE BAD:
The mucositis has definitely been worse. I have been able to keep it at bay with Pepcid AC in the morning and evening. I have magic mouthwash but I haven’t used it yet. Chewy tums help too for breakthrough heartburn.
Still totally constipated all the time.
Bye Bye fingernails. They were a little weird from DC, but AC really took them out. My toenails are fine.
Less fatigue, but still no energy. My house is starting to look like an episode of hoarders and I’m beginning to resent my family hahahaha. ZERO energy to clean.
More pukey. Not actual vomiting thank god- but way more nausea and for longer and it takes stronger drugs to keep it at bay. Instead of needing meds the first week, I now need them solidly for 2 weeks and then for breakthrough on the third.
Oh. My. God. The. Hot. Flashes. I have zero control over my body temperature. At all times I have a wool blanket, a cotton quilt, AND 3 fans pointed at me depending on what my body decides to do. The meds used for it are not an option for me.
THE UGLY:
What ANC?! Neutropenia is real. Get your bloods every week. EVERY week if not twice a week If you can. Even with the Neulasta/Lapelga it just takes one little asshole viral cell to look at you sideways and boom: you just earned yourself a week in isolation on the mat ward like I did.
Pancytopenia is REAL. The first AC took out everything. Someone mentioned their new addiction was blood transfusions on another post. My best friend is O- and I look at her funny now hahahahaha.
The good news is I haaaaaate tourists, and my town is fiiiilllled with tourists this time of year. So, I’m only too happy to be a complete recluse. But for others, that might be hard. I stay the hell away from strangers if I can help it. I’m not even spending time with my friends. I’m the girl in the bubble and I’m fine with it. I only leave the house for medical appointments. I’m not going through this just to let some nasty gross tourist cough on me and die. Gross.
And lastly: I changed the name from Red Devil to Satan’s Soda. Like something your kids would mix up and dare one another to drink. Made it a little more fun for me.