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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So, how are you doing adding Lenvima to your Keytruda? Any problems with a hoarse voice or phlegm? Are you more tired? I started on 14 mg and went to 8 mg.
Dream spirit,?
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1 ReactionSorry to hear what you are going through! The misdiagnosis must shake your trust a bit in the medical field. I've done Paxitaxel, Keytruda, and Carbo platin for 6 cycles at 6 hours a shot every 3 weeks - 18 weeks. I am also wiped out. CT scan indicates cancer growth, so not sure how much it helped. They want to to just do the Keytruda by itself and referred me to palliative care. I'll let you know how I do on Keytruda alone as far as side effects. I think I am out of Western Medicine options. I read Radical Remission, listen to William Li on You Tube about diet, and also read about Thomas Seyfried and his theory that cancer is, at least in part, a metabolic disease. I have changed my diet to eleminate sweets and carbs but the cancer is still gaining on me. I'm not giving up though, and will do what I can to keep fighting it. I may try Seyfrieds Press Pulse program. Your comment encourages me to seek out a second opinion. Thank you for sharing your difficult journey.
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3 ReactionsI'm not a doctor, but I really think you should do everything you can to try Enhertu (I recall that you're HER2+, correct?). If your doctor can't get you on it, you should try a different doctor. If you are in the US, you are absolutely eligible for it now, having failed platinum based chemotherapy.
IMO it's crazy for them to keep you on Keytruda. If it didn't work together with carbo/taxol, it's not going to work alone. It's things like this that make me wonder if doctors have a financial incentive to order Keytruda, which makes huge amounts of money for Merck per dose.
There have been some not-so-happy campers on Enhertu on this forum lately, but other people have had pretty good experiences. It would be a shame not to try it.
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2 ReactionsKatie8 replies
Any phlegm in throat with your hoarseness and dry mouth? Do any of you use a Cpap machine to sleep?
Ginger lemon tea helps me.
Keep talking.
Had to go off Carboplatin because I had allergic reaction to it. Have any of you experienced hearing loss due to Carboplatin?
Don’t give up. The human body is stronger than you think!
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1 ReactionHello
Thanks so much for this! I gave me a little hope when I was feeling pretty discouraged.
My Dr. tried to get me on Enhertu at beginning and it was turned down by insurance. I have Clear Cell Carcinoma which is rare, so that said it wasn't standard treatment. She then tried to get me on it as a "compassionate" case but no luck. I have a conference this Tuesday. She will at least get me on a similar drug. She canceled this weeks chomo. Not sure whether she finally looked at my test results, or if in response to me questioning.
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1 ReactionMaybe - my husband thinks so. I go in for a hearing test tomorrow so we will see what the test says.
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1 ReactionEnhertu is FDA-approved for absolutely all HER2+ tumors. Rare, clear cell, whatever, should have nothing to do with it. This is something that US insurance companies should approve, especially once you've failed platinum-based chemo. Initially you hadn't failed carbo/taxol yet, but now you have.
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