Keytruda + Lenvima For Recurrent Endometrial Serrous Carcinoma

Posted by beviebk1 @beviebk1, Oct 15, 2023

I was diagnosed with stage 4 endometrial cancer in 2021. I had a total hysterectomy and my omentum was also removed. My initial CA-125 was 500, but after carboplatin-taxol chemo my number went down to 15. I had ct scans every 3 months and all were good until this year. Three lymph nodes showed some small increased sizes and after another 2 scans they had continued to increase. A biopsy confirmed that my serrous carcinoma had returned. I've had no symtpoms and feel fine. I'm now starting my treatment with Keytruda and Lenvima.
I'm looking to hear from others that have had this treatment and get some tips and encouragement.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Hi @beviebk1, I’m sorry to hear that cancer has made a return appearance. I’m tagging both @paula21 and @rainna who have experience with pembrolizumab (Keytruda) and lenvatinib (Lenvima) for endometrial cancer.

Bev, have you started this new treatment yet? How are you doing?

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@colleenyoung

Hi @beviebk1, I’m sorry to hear that cancer has made a return appearance. I’m tagging both @paula21 and @rainna who have experience with pembrolizumab (Keytruda) and lenvatinib (Lenvima) for endometrial cancer.

Bev, have you started this new treatment yet? How are you doing?

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Hi Colleen,
I've started my Keytruda about 2 weeks ago. I'm scheduled for my 2nd. infusion in a week.
I've been on the Lenvima at 4mg. for a week and will probably move up to 8mg. by the end of next week.
So far I've been doing well with no apparent side effects.
Thanks so much for responding. I look forward to more conversation and firsthand experiences from others.

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Hello all .My name is Bert I was diagnosed with stage four follicle thyroid cancer , I start my treatment Lenvatinib 14 mg today anyone used this much and did it appear to work ? Anyone respond will be Appreciate Thanks

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@bert60

Hello all .My name is Bert I was diagnosed with stage four follicle thyroid cancer , I start my treatment Lenvatinib 14 mg today anyone used this much and did it appear to work ? Anyone respond will be Appreciate Thanks

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I haven't started Lenvatinib (and am plotting how to avoid it), but I was discussing it with the nurse practitioner yesterday. She said that they start people at 20 mg, but that almost nobody stays that high. She said most people end up at 14 or 10 mg. Like most cancer drugs, it works pretty well for some people but not others.

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@bert60

Hello all .My name is Bert I was diagnosed with stage four follicle thyroid cancer , I start my treatment Lenvatinib 14 mg today anyone used this much and did it appear to work ? Anyone respond will be Appreciate Thanks

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Hi @bert60, welcome. I recommend that you post your question in the Thyroid Cancer support group here: https://connect.mayoclinic.org/group/thyroid-cancer/

Here's a discussion you may wish to join in the group:
- Anyone taking Lenvatinib?
https://connect.mayoclinic.org/discussion/anyone-taking-lenvatinib/

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@val64

I haven't started Lenvatinib (and am plotting how to avoid it), but I was discussing it with the nurse practitioner yesterday. She said that they start people at 20 mg, but that almost nobody stays that high. She said most people end up at 14 or 10 mg. Like most cancer drugs, it works pretty well for some people but not others.

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hi @bert60, lilyann here.

they want me to start at 12 mg. so i was interested in how you are doing taking the drug. the side effects alone are enough to make you want to scratch your head and wonder why the FDA has even let this go on the market. my oncologist says how the only big side effect is it causes high blood pressure, and if mine did go high, never had a problem with my blood pressure. she said she would rx some blood pressure pills. now, with my swallowing problem, of course, i hate the idea of any pills, i already take a thyroid pill, just got done with antibiotics and ibuprofen and only a few Tylenol, i do not know what in the world went on with the amoxicillin, it began to smell like rotten eggs and of my goodness, i have a nose like a dog and believe you me it was one hard pill to take, you know, the closer it got to my nose...........ugh! so anyway, the oncologist thought i would appreciate that being it was only going to be one pill.........the lenvima. wonderful. so its on hold right now as i am waiting for my gums to heal better from the extractions. remember the old saying: start slow.............well..........that's how i feel about drugs...........why not start low dose and then up it gradually. sorry for the long rant. so glad to have someone to talk to you along with colleen. take care

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@colleenyoung

Hi @beviebk1, I’m sorry to hear that cancer has made a return appearance. I’m tagging both @paula21 and @rainna who have experience with pembrolizumab (Keytruda) and lenvatinib (Lenvima) for endometrial cancer.

Bev, have you started this new treatment yet? How are you doing?

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I'd be interested in what paula21 and rainna have to say about their experiences with LenPem, too. I have Stage IV serous cell endometrial cancer, and have been given a choice between LenPem or participating in a clinical study to evaluate the efficacy and safety of trastuzumab deruxtecan (T-DXd) for the treatment of selected HER2-expressing tumors, which are usually present in a variety cancer types, including serous cell endometrial cancer. I've read the scientific literature on both treatments and see that both appear to have serious side effects. The T-DXd so far is hypothesized to "show meaningful clinical activity and a favorable risk benefit" (whatever that really means). No study results have been published, that I can find. My situation is that I must allow the cancer to grow to a size that qualify me to participate in the study. This makes me nervous, given that this is a study and no results have been published, and that LenPem has been the recommended treatment for treatment for late-stage endometrial cancer. This I can start on immediately. The choice is up to me:(

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@cookercooker

I'd be interested in what paula21 and rainna have to say about their experiences with LenPem, too. I have Stage IV serous cell endometrial cancer, and have been given a choice between LenPem or participating in a clinical study to evaluate the efficacy and safety of trastuzumab deruxtecan (T-DXd) for the treatment of selected HER2-expressing tumors, which are usually present in a variety cancer types, including serous cell endometrial cancer. I've read the scientific literature on both treatments and see that both appear to have serious side effects. The T-DXd so far is hypothesized to "show meaningful clinical activity and a favorable risk benefit" (whatever that really means). No study results have been published, that I can find. My situation is that I must allow the cancer to grow to a size that qualify me to participate in the study. This makes me nervous, given that this is a study and no results have been published, and that LenPem has been the recommended treatment for treatment for late-stage endometrial cancer. This I can start on immediately. The choice is up to me:(

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Do you know if your tumor is HER2-positive at a high level? Or does it have lower levels of HER2? My understanding is that T-DXd (Enhertu) has been approved by the FDA for all high level HER2 positive tumors, including gynecological. So if your tumor's HER2 level is high enough, you should be able to get T-DXd outside of the trial without waiting for the tumor to grow, if that seems like the better choice to you. There are Enhertu discussions on this board, and some women have taken it at least somewhat successfully.

I personally am planning to avoid LenPem, since I already failed on carbo/taxol / pembro, and have no faith that LenPem would be any better. It's going to be clinical trials for me. (My tumor is HER2 negative so no Enhertu for me.)

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My tumor is HER2 positive (2+). I'm in Canada and don''t know of any treatments outside of the clinical study I mentioned.
I failed on paclitaxel/carboplatin: my ca levels increased ( except for ca 125, which was still moderately high, in my estimation.) Now the tumor has spread to my inguinal nodes:(
Thank you for your suggestion. I'll look up the Enhertu discussion.
Best of luck to you:)

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I was diagnosed in Oct of 2023 with endometrial stage 2 high grade cancer. I had a total hysterectomy. I then did 6 months of Carbo/Taxol, my last treatment was April 2024. The chemo was knocing me out, so the doctors scheduled a CT for that week and results showed I was clear and could stop short of 6 rounds (I did 5 1/3 rounds total). Last blood test in May. In late June 2024 I started having non-specified abdominal pains - they kind of moved around (not a specific area). The pain worsened through July. I had a CT with contrast in August showing metastasis in my abdomen, like tiny grains of sand. Biopsy results were metastatic carcinoma, consistent with the type of endometrial cancer we thought was removed. Keytruda + Lenvima were the next options available to me. I started the immunotherapy 9/5/24, and have stayed on the 20mg Lenvima daily (I know - NO ONE has done this!) and I have good news to share. My CA 125 in August was 634, September 1,017, and now..... 131! I can't speak to anyone else's case, but it seems these medications were made for me. Side effects are minimal - tired, sore mouth, some hand sores that pop out of nowhere... but overall it's insanely encouraging. Fingers crossed, the future is looking brighter!!

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