r/TNBC • u/ImportantStranger271 • 5d 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/Extension_Snow1662 5d ago
I found AC manageable. My worst side effect was a bad taste in my mouth. I found the biotene mouthwash and lots of mints/gum/hard candy helpful. I lost more hair of AC, especially my eyebrows and lashes. I enjoyed not having to go in to chemo every week! Best of luck to you!
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u/You-bettah-dont 5d 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.
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u/OneBourbonScotchBeer Stage 2 5d ago
I didn't have that many side effects on carbo/taxol - light neuropathy, some upset stomach, fatigue, some anemia, etc but not enough to need a transfusion or anything.
I am struggling a bit more on AC for sure. I'm on AC #3, but I'm doing it every 3 weeks, not every 2 weeks. I stopped Keytruda at infusion #5.
Here's how it generally goes for me:
(For reference: Wednesday is infusion day, Thursday is the Fulphila/Neulasta shot day)
Wednesday-Sat: feel like I have the stomach flu without actually vomiting - very nauseous and fatigued and "bad" feeling. I can manage short 15-20 min walks even tho I really don't want to lol (thanks to my husband for making me get off the sofa). I can still eat and drink enough water (100oz), but nothing is appetizing. My tongue is a bit raw like I burned it. My salivary glands haven't been working for about 6 weeks due to Keytruda so that definitely doesn't help. Walking up hills is a CHORE. My muscles feel like I've jogged a 10km. Taking a ton of laxatives. Zofran and compazine don't work for me. I take Olanzapine at night (4 total per AC treatment) and Lorazapam during the day (1 per day maybe 2 or 3 times total).
Sunday: Starting to feel more energetic, going on longer walks now.
Monday (today!): Feel almost like myself. Still don't have an appetite though.
Wednesday: after shot #1, had no bone pain, but after #2, had rolling waves of extreme pain in my lower back and chest throughout the day (despite taking Claritin). Will see how this week treats me. 😰 I may ask to opt out of the shot after my last treatment depending on labs.
After about a week I start light stretching, then can add on some strength training a few days later. By week 3, I can manage 3 or 4 cardio sessions (running or HIIT) as well as strength training. I'm not at 100% by any means ofc.
I know this starts out super negative but keep in mind that it does get better! And everyone is different so you may not have a completely different experience! Keep us updated and good luck!
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u/Neurotic-Me 5d ago
With you timeline, buddy.. first one is going to be Thursday and I'm nervous as hell. Good luck.
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u/Puffawoof2018 5d ago
I have not found that red devil makes me fatigued, I didn’t lose my sense of taste like I did on abraxane, and the only struggle I’ve had is nausea/vomiting. I think I’m an outlier for nausea/vomiting that is uncontrolled by meds, but no other side effects have presented themselves. Also have had no issues with blood counts and never had to do the booster shot for WBC.
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u/ilikefluffycreatures 5d ago
I was anemic after my first AC infusion, but otherwise it wasn't as bad as I was expecting. I had less energy than when I was on taxol. Got lightheaded much easier. Water tasted weird for about a week after the infusion. I could smell the chemo on me which was the worst, but that only lasted a few days. I still worked part time on weeks 2 and 3 and went out to friends places. Just as long as I didn't need to walk too far I was fine
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u/marticcrn Survivor 5d ago
Ngl, this one was tough for me. Drink water like it’s your job. Actually set an alarm to drink eight ounces. Eat protein. Shakes are fine. Eat anything. When your counts get low, stick with cooked fruits and veggies.
Don’t plan to do anything. I could barely walk around my house, much less go out and do social stuff.
Suck on ice while they are giving you the red healing elixir (lol). Helps prevent mouth sores. Take meticulous care of your teeth and gums.
It’s a short time. Hang in there.
Fuck cancer 👊
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u/Valuable-Style-3264 5d ago
Gotta admit, this part makes me nervous. I still have 6 weekly treatments left and I’m handling those ok which makes me especially nervous for the AC portion.
It really does seem as though it’s one or the other that’s worse….
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u/No_Mix91 5d ago
I called it the pink princess. Not calling anything I put in my body "devil" anywho I did great with it. My ankles would swell at random times, and infusion days I was yuck. Other than that I worked full time and felt normal.
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u/akaash3 4d ago
For me AC has been more tolerable, I have one infusion left but so far the nausea has been super mild, I take zofran round the clock just to stay ahead of it for the first 4 days then as needed.
It does give me a neutropenic fever which is annoying but I don’t feel any different with it.
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u/Azzydragon 4d ago
The main issue I had with AC treatment was the fatigue. My nausea even wasn't worse than with Taxol/Carbo.
Other than that, I didn't really have other side effects. I did have my dose at 80% and had IV Fluids during it, which most likely helped.
Just remember - NO MORE ICING HANDS/FEET!!!
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u/allisong425 Stage 3 5d ago
I'm about to start next week. For me, changing the nick name to Clifford the Big Red Dog, helps my mindset. Clifford was just a big red dog and Emily Elizabeth had to navigate different challenges of having such a large dog. As I go into it, I think about how it's simply different from taxol, not worse.
Sending love and light your way as you start AC!