KEYNOTE 522
Is there anyone on the KEYNOTE 522 Regimen, or has been on it? I am searching everywhere to find someone to communicate with on this. I am recently diagnosed with TNBC and the KEYNOTE is now apparently the Standard of Care. Please answer if you can. Thank you.
(Jan. 2025)
Comments
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Hi, I was on the Keynote 522 regimen in 2024. Finished chemo portion in October, still receiving Keytruda every 3 weeks. Chose BMX in November, TE in December.
I was diagnosed locally and Keynote 522 was presented. Traveled to a major city hospital for another opinion and they confirmed Keynote 522 was the standard and what they would use if I chose to be treated there. The timelines were slightly different. AC and Taxol every 2 weeks (major hospital) vs every 3 weeks.
I chose to be treated locally. My oncologist switched practices and I decided to stay. The 2nd local oncologist used the 2 week AC/Taxol regimen.
How can I help you?
MC
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Hello,
Sorry for delay in getting back to you.
I will have a PORT placed on Tuesday, and begin with Keynote 522 on Thursday of next week.
Chemo once a week with the Keytruda added every three weeks. For 3 months.
Then 2 additional months on two other chemo drugs, again along with the Keytruda .
i guess what I want to know is how tough this road is going to be. I know everyone is different
But if you can offer me any insight into what to expect since you have been on it. I have done all the reading and my oncologist has educated me, but I have no knowledge from anyone who has personally been thru it.
Thanks in advance. Nancy1 -
Hello,
Sorry for delay in getting back to you.
I will have a PORT placed on Tuesday, and begin with Keynote 522 on Thursday of next week.
Chemo once a week with the Keytruda added every three weeks. For 3 months.
Then 2 additional months on two other chemo drugs, again along with the Keytruda .
i guess what I want to know is how tough this road is going to be. I know everyone is different
But if you can offer me any insight into what to expect since you have been on it. I have done all the reading and my oncologist has educated me, but I have no knowledge from anyone who has personally been thru it.
Thanks in advance. Nancy0 -
Hi Nancy,
Glad you have had good education by your medical team.
The regimen was physically exhausting. I spent most of the summer dozing in my chair with my feet up.
I began to lose hair after 2 weeks on Taxol. Nurse educator said it wouldn't happen until the AC portion. Did not cold-cap bcs limited ability at my center and $$$. Quickly got a cheap wig, later got a more expensive wig. Wore (and still do) a winter beanie cap at home and a bucket hat out unless I felt I needed my wig.
I iced my hand and feet to prevent neuropathy in the first portion of chemo. Developed a bit of neuropathy my feet, used menthol rub and now it seems to be gone.
My taste and smell was off. Nothing tasted "good." It has been a joy to experience delicious foods again!
I used the antinausea meds and they prevented vomiting.
The infusions left me exhausted and I slept quite a bit the first 2-3 days. As the weeks went by my biggest problem was exhaustion coupled with insomnia. Some nights I would just sit with my eyes closed, too tired to read.
Overall, it wasn't as bad as I had imagined. I hope your experience is the same or better.♥️
Maureen
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Dear Maureen,
THANK YOU so very very much for your reply.I appreciate all the info you sent.
I just recently found out how quickly the hair goes. Thought it was more gradual.
They told me about the “cold mitts and booties” that I can wear during treatment. I am 100% there as neuropathy is my biggest worry…Glad yo hear that the anti nausea drugs worked.
1 -
Dear Maureen,
THANK YOU so very very much for your reply.I appreciate all the info you sent.
I just recently found out how quickly the hair goes. Thought it was more gradual.
They told me about the “cold mitts and booties” that I can wear during treatment. I am 100% there as neuropathy is my biggest worry…Glad to hear that the anti nausea drugs worked.
I have been told about the exhaustion, and the insomia… well I have not slept since Veterans Day when this journey started. Hoping for a strong sleeping pill if that will be allowed.
Thank you so much. The information in the Keynote 522 presentation is overwhelming.
You are the only person that has responded to my request, from any site I have been on.
You really have no idea how much I appreciate this, as my real journey begins this week.May you continue to be well.
Best regards,
Nancy1 -
Nancy, I hope you can sleep. One of the Keynote 522 adjuct drugs is Ativan. Ha, ha, it was never prescribed for me, but it certainly knocked me out years ago. I think it's primarily for anxiety, but this disease is anxiety producing.
A relative out of state brought "mj"gummies, no legal mj here. I couldn't tell a difference, but who knows.
Wish you the very best. It is hard to imagine when you begin, but there is an end to it, and for most of us, this regimen gets rid of the problem.
I get a notice in my email, so let me know how you are doing. I don't always look at email, so it may be a day or two to respond.
All the best, Maureen
1
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