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Keytruda/Lenvima - positive results?
Hello, I am new to the group. Originally diagnosed in 2021 with endometrial cancer but at the time they told me it was endometrioid subtype. Underwent radiation, and was cleared. I followed up with regular doctor visits as required CT scans PET scans etc. I was told that this was the type of subtype that would never come back and I felt pretty good. July 2024 PET scan showed that I had a reoccurrence it was extremely advanced. If it were to be stage it would be stage 4 with ascites and had moved into lymph nodes and lungs. Local GynOc was completely dumbfounded about how that subtype could reoccur so aggressively. I was put on Carbotaxol and Pembro for three months and had mixed results and then I was put on hormonal therapy (Verzenio/Faslodex). Sometime during my first cycle, I went for a second opinion at Moffitt and there they told me I was misdiagnosed in 2021 and I had a high-grade serous endometrial cancer. Now everything made more sense. However, they told me to finish out the three cycles of hormonal therapy. It completely wiped me out and depleted me of all my energy, I had diarrhea for three months and I ended up in the hospital trying to get my potassium, etc. back up. Now they are going to start Lenvima/Keytruda. My CA-125 doubled to over 500 in the past 4-6 weeks. I did have paracentesis when I was in the hospital a few weeks ago and at least now I can eat but I'm still not very hungry and I'm extremely, extremely fatigued. I would love to hear comments from anyone else in my situation be it success stories or any type of advice. Thank you
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Has DNA sequencing been done on your tumor? That is sometimes the ticket into a clinical trial, although ascites that has to be drained sometimes disqualifies you. (I had some ascites when I started my first clinical trial, but I didn't need to get it drained.)
Has it been tested for HER2? High levels of HER 2 would qualify you for Enhertu, which works for some people.
But I would think the Drs at Moffitt would suggest both these things and more. My (non-medical) feeling is that you need to start something ASAP. If Lenvima/Keytruda is what is available soonest, that might be the best choice. Hopefully that will improve things at least somewhat and give you time to think about what your next option will be.
We're you completely off treatment for the last 4-6 weeks?
@roulaocchi I'd like to welcome you to Mayo Clinic Connect and to our Gynecological Cancers support group. The news of the recurrence must have come as a huge shock to you. My reaction when I had a recurrence was that I could barely function or carry on a conversation for over 24 hours. Once I had a plan in place with my cancer care team I started to feel better but I was still very frightened.
I did not have chemotherapy when I was diagnosed with endometroid adenocarcinoma in 2019 and a recurrence in 2021 so I cannot offer my experiences. @val64 has some good suggestions including that the cancer care team at Moffitt has likely considered the best approaches for you. For that reason I am relieved to hear that you are being treated at Moffitt. You can also talk with them about clinical trials for which you may qualify.
When will you start the new treatment?
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2 ReactionsHi, I've been on the hormonal treatment but stopped Feb 10. I appreciate the feedback. Things to consider, that's what I need.
Hello, thank you for your response - I started 9 days ago with Lenvima pills and 2 days ago I got the Keytruda infusion.
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