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.

That's wonderful that Keytruda+Lenvima is working for you and that the side effects are manageable.

Do you know what mutations are in your tumor? MMR? p53?

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@andreausa

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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That's really exciting news! I found the most recent study results of Keytruda + Lenvima here https://www.cancernetwork.com/view/lenvatinib-combo-yields-substantial-antitumor-activity-in-endometrial-cancer, for anyone else that's interested. It appears that 20mg daily is the prescribed treatment.

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@val64

That's wonderful that Keytruda+Lenvima is working for you and that the side effects are manageable.

Do you know what mutations are in your tumor? MMR? p53?

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I'm not sure about the MMR, but P53 = Aberrant over-expression (whatever that means) 🙂

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@andreausa

I'm not sure about the MMR, but P53 = Aberrant over-expression (whatever that means) 🙂

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Re: aberrant over-expression of p53 (TP53): https://www.nature.com/articles/s41379-022-01102-x.
Also, I'd like to report that I will likely be put on LenPem in the very near future and am anxious to hear more about your experience with it;)

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@cookercooker

Re: aberrant over-expression of p53 (TP53): https://www.nature.com/articles/s41379-022-01102-x.
Also, I'd like to report that I will likely be put on LenPem in the very near future and am anxious to hear more about your experience with it;)

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Thank you so much for the article! Very interesting. I'm happy to answer any other questions you have:)

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@andreausa

Thank you so much for the article! Very interesting. I'm happy to answer any other questions you have:)

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OK. Thanks.
My oncologist said that the cocktail has very bad side FX. He was more amenable to the treatment ENHERTU. However, I have found out that my cancerous lymph node isn't big enough to qualify me for the clinical study. He hasn't provided any more options: I have stage IIIC serous uterine cancer. He mentioned hormonal therapy but said it wouldn't do much good. So, I'm looking at the LenPem option again.
I know you said you didn't have much of a problem with it. Is my oncologist being to careful, pessimistic about the side FX?

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@cookercooker

OK. Thanks.
My oncologist said that the cocktail has very bad side FX. He was more amenable to the treatment ENHERTU. However, I have found out that my cancerous lymph node isn't big enough to qualify me for the clinical study. He hasn't provided any more options: I have stage IIIC serous uterine cancer. He mentioned hormonal therapy but said it wouldn't do much good. So, I'm looking at the LenPem option again.
I know you said you didn't have much of a problem with it. Is my oncologist being to careful, pessimistic about the side FX?

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Honestly, I don't have anything to compare it to besides the Carbo/Taxel, and this is WAY better in my opinion. I did work through the chemo as much as I could, but the mental fog drove me crazy.
The LenPem side effect list is long, and perhaps they will get worse (cumulative) but I'm feeling pretty good overall. Going to work almost every day now, feeling tired a lot but that's expected as well. Also, the Pem is only 30 minutes IV - not like the chemo 6 hours.
I'm sure if the effects are too strong they will suggest a lower Lenvima dose for you, but I am so encouraged about this treatment, I would tell you give it a try!
FYI I am 5'10" 154lbs - so perhaps body weight/height is helping me to accept the full 20mg.

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@andreausa

Honestly, I don't have anything to compare it to besides the Carbo/Taxel, and this is WAY better in my opinion. I did work through the chemo as much as I could, but the mental fog drove me crazy.
The LenPem side effect list is long, and perhaps they will get worse (cumulative) but I'm feeling pretty good overall. Going to work almost every day now, feeling tired a lot but that's expected as well. Also, the Pem is only 30 minutes IV - not like the chemo 6 hours.
I'm sure if the effects are too strong they will suggest a lower Lenvima dose for you, but I am so encouraged about this treatment, I would tell you give it a try!
FYI I am 5'10" 154lbs - so perhaps body weight/height is helping me to accept the full 20mg.

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I had a round of nab-Paclitaxel/Carboplatin. The infusion was a mere hour. I can't imagine having to sit thee for 6 hours! I had a severe reaction to the Pax on the first infusion and therefore was switched to the nab form. I had mental fog too and and still suffering from neuropathy in my hands and feet. Lost all my body hair to boot. I am hoping will be able to keep my hair on the LenPem. It's taken 7 months for it to grow back, albeit it's only 2" long. I kinda like short and spiky.
I'm 5'4"- 120 lbs, down from 130 lbs while on chemo: I was eating like a horse.
Since my latest CT scan show that the cancer in my inguinal lymph hasn't increase, I'm also going to discuss the possibility of removing it. I know that this may cause problems, i.e., lymphedema, but I really want to get this alien out of me.
Your and anybody else's thoughts on them matter would be so appreciated:)

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@cookercooker

I had a round of nab-Paclitaxel/Carboplatin. The infusion was a mere hour. I can't imagine having to sit thee for 6 hours! I had a severe reaction to the Pax on the first infusion and therefore was switched to the nab form. I had mental fog too and and still suffering from neuropathy in my hands and feet. Lost all my body hair to boot. I am hoping will be able to keep my hair on the LenPem. It's taken 7 months for it to grow back, albeit it's only 2" long. I kinda like short and spiky.
I'm 5'4"- 120 lbs, down from 130 lbs while on chemo: I was eating like a horse.
Since my latest CT scan show that the cancer in my inguinal lymph hasn't increase, I'm also going to discuss the possibility of removing it. I know that this may cause problems, i.e., lymphedema, but I really want to get this alien out of me.
Your and anybody else's thoughts on them matter would be so appreciated:)

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I'm still dealing with the neuropathy in my feet (ouch) and I did loose all my hair, however it's growing back and not falling out again on the Lem/Pen so that's a plus!

Good luck to you and let me k now how it goes!

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