Topic: Carboplatin-Taxol + Keytruda - Thread to Share Your Experience

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 3, 2021 08:41PM - edited Sep 30, 2021 07:09AM by oddboood

Posted on: Sep 3, 2021 08:41PM - edited Sep 30, 2021 07:09AM by oddboood

oddboood wrote:

Hi Everyone,

Next week I will start a 24-week regimen of weekly Carboplatin/Taxol with Keytruda once every 3 weeks for 12 weeks. I understand this is the newest protocol for TNBC, so I thought it might be good to start a thread. I look forward to the chance for all of us to learn from one another!

Aleta

Dx at 56. Trying to make lemonade.
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Oct 2, 2021 05:48PM AnnieG11 wrote:

oh, Aleta, I’m so encouraged by your post. I just started my first treatment last Tuesday and have been totally exhausted all week. Can hardly get out of bed. Dizzy. Weak. We are on the same regimen so I am looking forward to feeling better, hopefully. Please keep me posted.
I was feeling so unwell I started getting almost panic attacks which I have suffered from previously and take Paxil for. It always worked until I started the chemo and now I am trying to control my anxiety. The nurse bumped it up to 30mg from 20 but I’m afraid to take advice on these type of meds from a nurse. I’m just a mess. Not looking forward to next Tuesday.
thank you for allowing me to vent

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Oct 6, 2021 05:29AM Delta_Moon wrote:

My chemo starts Monday, every 3 weeks for 18 weeks. The Fabulous Dr Baker is very enthusiastic about this new combination of drugs and has very high hopes for a good outcome. My son is 2 years out from rectal cancer and is in total remission so I'm assuming the same will be true for me. My youngest daughter is getting married 2 weeks after my first treatment so I'm really hoping I can stave off the worst of the side effects for at least that long.

And it makes me laugh to see the typo in the thread title. My fingers are crossed that I don't wind up calling it KeyTURDa before this is all over with.

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Oct 9, 2021 07:26PM AnnieG11 wrote:

Had my second course last Tuesday. Felt great for the following few days. Today, Saturday, I can't even get out of bed I'm so weak. Has anyone experienced this? thank you

annie

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Oct 11, 2021 11:41PM Kendara wrote:

Aleta, I am so happy for your great response to your treatment! I had my third infusion today. Almost didn’t because my neutrophils were too low (after being too high last week!). Doctor decided to go ahead, but I have to get three filgrastim shots over the next three days to stimulate white blood cell production.

My side effects have included diarrhea, nausea, insomnia, flushing, neuropathy, loss of appetite, general malaise, loss of muscle mass, elevated blood glucose, low neutrophils, and a really foul taste in my mouth that was not relived by anything. That happened the day after the second infusion and lasted three days. Some of my side effects were related to the dexamethasone and some to the chemo drugs.

Despite the side effects, I am glad to be getting treatment. My tumor feels smaller and softer to me. I will have an ultrasound the day after the seventh treatment and that will be the real measure of whether the treatments are working. I feel like I’m getting the latest and best protocol and if I have a chance to beat this cancer, this is it.

My hair hasn’t fallen out yet, although I had it cut into a really short pixie in anticipation of the mess. My husband loves my super short hair, which he had never seen on me because I wore my hair long for 40 years. He’s already lobbying for me to keep it short after treatment ends and it grows back. We’ll cross that bridge when we come to it.

Sending loving thoughts and encouragement to all.

Kendar

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Oct 14, 2021 09:01AM oddboood wrote:

Thanks, Kendara! Sorry you are having a rough go right from the start. But yes, even with the crappy days, it does feel good to know we are kicking cancer's butt!

And welcome AnnieG, DeltaMoon, mammacure! It is so great to have this forum to share experiences. Especially since this treatment is so new for bc patients, I think we really can gather some important collective wisdom here. In that vein, here's an update from me:

So after a ridiculously easy first four weeks, it got real fast. Treatment five hit me hard - like all the pent up side effects suddenly decided to burst forth in a great big blaze of glory: hair falling out in big clumps, fatigue, painful mouth sores, and, as an extra bonus, the evening after the treatment I developed a rash that covered my face and body with itchy bumps, and a fever that spiked at 101.8 with a sore throat and a weird cough. Yowza.

I ended up in my hospital's acute care clinic the day after the fifth treatment - they weren't sure what was going on, but the fever went way down by late afternoon and tests showed no COVID or sign of other infection, so they let me go home. By the end of the following day I was fever free, and the rash had started to fade. The rest of that week was okay - just minor fatigue, nasty mouth sores, and ongoing hair loss (that hit me hardest - knew it was coming, but still - it just made me sad, you know?).

Enter treatment six - yesterday. A few hours after I got home, the rash came back along with a fever of 102.8 and a cough (this AFTER taking ibuprofen and naproxen). Called my MO and he said take Tylenol, some more Demexthesone, and Benadryl in addition to the ibuprofen, and go to the ER if I had trouble breathing. He seems to think the rash and fever are a Carboplatin reaction; it turns out that somewhere around treatments 6 - 8, many folks run into hypersensitivity reactions to this drug. My reaction is apparantly considered "mild;" they only get really excited if you show signs of full anaphylactic shock. Still, MO says he may cut out the Carboplatin completely. We have an appointment before my next infusion and will talk through it then. I'm feeling much better this morning - fever is gone, but the rash has me looking like a ripe tomato. Devil

Reading up on the Carbo toxicity issue, I learned that some doctors will do a skin test on you before treatment 6 -7 so they know ahead of time if you will have an hypersensitivity reaction. Then they can lower the dose or decrease the infusion rate to help mitigate the reaction. Might be worth mentioning to you MO as you enter week 5 -6.

Sending love and light to all, and sincere thanks for this wonderful supportive community.

XOXO,

Aleta

Dx at 56. Trying to make lemonade.
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Oct 14, 2021 08:11PM mamacure wrote:

Hang in there oddboood, Carbo is hard, I ended up skipping my final Carbo, it was just too much.

DX 3/23/21 | IDC LEFT | IBC LEFT | ER-/PR-/HER-2- (FISH) | T4b(inflammatory)N1, overall stage IIIc | Neoadjuvant Chemotherapy April 2021 Taxol, Carbo, Ketruda | Chemo May 2021 Abraxane, Carbo, Keytruda ,AC | Integrative Oncology & Accupuncture
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Oct 18, 2021 06:38AM Delta_Moon wrote:

Week One Recap: Things did not progress in the order I expected them to. From what I've read and heard, I expected nausea first, then the muscle aches and exhaustion. Thinking I had caught a break with the nausea when there was no sign of it after 4 days. Monday and most of Tuesday were pretty normal days. Faded pretty quickly Tuesday evening and the muscle pain (not aches, actual pain) started. Spent most of my time in bed trying to get comfortable, with short spans when I had to get up and move around. Nothing much helped though so I wound up back in bed. None of the expected exhaustion to speak of, beyond just not being able to sleep. The nausea started Friday night (should have known I wouldn't escape it) and most of Saturday. No actual throwing up thankfully, just feeling like I needed to. Along with the nausea came the joint pain. First my shoulders and hips, then moving down to knees and ankles. Even rolling over in the bed was painful at that point. I had a burst of energy Saturday afternoon and got out to run a couple of errands in my "new" car. And because it's me, and I don't understand the concept of moderation, I wound up back in the bed by mid-afternoon. Woke up long enough to eat, then back to bed. Sunday morning the gas pains started. Hard abdominal gas pains. Dealt with that all day and into the evening. Nothing I tried gave me any relief so I'm open to suggestions.

Because this is my first round, I don't know if subsequent rounds will follow the same pattern but at least I have an idea of what to expect. The not knowing part was the worst. Just waking up and wondering "what next?" was making me crazy. At least now I feel a little more prepared. I will be 1/3 of the way through treatment by my birthday, halfway through by Thanksgiving and 2/3 by the New Year. I can do anything for that long if I break it down into manageable segments.

Of course, all of this may be moot by the next chemo round. My daughter is getting married Saturday and even though I don't feel stressed about it, I'm sure I am to some degree. How that is affecting me, I have no idea. Guess I'll find out in a couple of weeks.

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Oct 23, 2021 06:22PM oddboood wrote:

Hi Delta Moon! Sorry to hear you had such a rough go of it right at the start! One thing that might make your situation a bit different from mine is that you are on a 3-week treatment schedule. Per my nurses, at least in the early weeks, weekly carbo/taxol is easier to tolerate? Perhaps if there are others on the three-week regimen they will also share.

Annie G11 - I felt that same fatigue your describe several days after my week six treatment. Unable to get out of bed, going to the toilet felt like climbing a mountain. It's getting better now, but not until after a rocky week (see below).

I actually had to skip my week 7 infusion because I'm in the hospital and have been for the past five days with a fever of 102+ that would not stay down - until today. It's been really rough - but in the past 24 hours I seem to have made progress, so I'm starting to feel hopeful. Docs have done what seems like millions of tests (CT/PET/X-ray/MRI) and taken gallons of blood, but they are still not sure what is causing the fever. My liver enzymes are also climbing every day, and for that reason I think they are starting to suspect Keytruda, which would be a huge bummer. Time will tell.

I think we'll all struggle in different ways at different points, but it's good to get all this information consolidated here so we can learn from and support one another as well as those who will enter treatment in the weeks and months to come.

Love to all you wonderful folks. Sending beams of love and healing all around.

Aleta

Dx at 56. Trying to make lemonade.
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Oct 24, 2021 07:26PM Kendara wrote:

Aleta-just read this and I am so sorry you are in the hospital (well, you were yesterday). I hope things have improved since you posted and that you're at home now. I hope the doctors figured out what was affecting your liver and that your enzymes went back to normal.

Delta Moon-how was the wedding? I hope all went well and that you felt good enough to enjoy every moment.

Annie-how are you doing? Post an update if you can.

I have my fifth infusion tomorrow. This was the worst week so far for me. My entire digestive tract from my esophagus to my colon hates me right now. My scalp is pretty unhappy too. The Pepcid isn't working for the acid reflux and the Compazine gives me headache and dizziness. I'm scared to take Imodium again because it shuts all GI tract movement down, and then when it wears off I get excruciating abdominal cramps as my intestines try to wake up. And I recognize that these are all considered “mild" side effects compared to the things that can put me in the hospital. Sad

Praying things get better for all of us.

Kendara

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Oct 25, 2021 06:04AM Delta_Moon wrote:

Kendara - Thank you for asking. The wedding was beautiful and went off without a (major) hitch and they're off on a honeymoon for a week, so I can stay in bed as long as I want every day until my second treatment next Monday. My friends rallied to help with everything I asked them to do, and some things I forgot needed doing. It was a wonderful weekend but I'm glad it's over. And for future reference, 2 glasses of champagne is a great laxative! p.s. A teaspoon of baking soda in half a glass of water is a magic potion for acid reflux 90% of the time.

Aleta - so sorry to hear about the fever. It's a toss up to me which is worse, having a fever or being nauseous. So far, I've avoided the fever. Hope you're out of the hospital by the time you read this.

Annie - Yes. Muscle aches and joint pain had me feeling weak as a kitten for several days after my first treatment. Even rolling over in the bed seemed like a monumental task at times. It has mostly gone away though, so hang in there and give it a few days.

I have been writing about this adventure on facebook and it seems to help. It not only helps me sort out my thoughts, but I'm getting feedback and suggestions from friends and strangers who have traveled a similar path before me (on different protocols) so at least I have something to ask my doctors about. High doses of Claritin before and after the chemo has been suggested several times, so that question is on my list for The Fabulous Dr Baker next week. He may say 'no' but he may say 'give it a try' and I'll have one more weapon in my arsenal to fight this battle with. I'm also sort of putting everything out there for the others who will follow us on this treatment path. It's pretty hard finding others who are triple neg on Keytruda, so maybe one of them will see something that might help them. Or maybe they'll offer ideas that will help me! It's exciting, but also daunting, to be "leading the charge" so to speak.

Delta

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