Endometrial high grade serous carcinoma grade 4B Keytruda/Lenvima

Options
theresap60
theresap60 Member Posts: 6 Member

Hi all! I am new to this board. I was on the breast cancer boards for several years starting in 2010. Now I am 64 yo and I have high grade serous carcinoma grade 4B. Had a radical hysterectomy June 2023. No radiation (yet). I went thru 5 out of 6 rounds of carbo/taxol and my cancer didn't respond to it. Now I'm on Keytruda/Lenvima. I had BP issues also and am now on 4 mg Lenvima with Keytruda every 3 weeks. I had my 4th round this past week. I did get a second opinion from a university GYN/ONC surgeon and she said she would recommend the same treatment. I feel like I have a death sentence so I came here to see if there are any survivors and how long have people successfully been on this current treatment protocol. I know it's pretty "new". And how are you managing side effects? This past round of Keytruda gave me more side effects than the others. The abdominal aches/pains are rough, so I've been wearing the abdominal binder from surgery several hours/day, especially when active (walking), and putting a pillow under my abs and laying across my bed, face down. This helps a lot! I don't know if I have surgical adhesions or if this is something I have to live with while on Keytruda/Lenvima. Thank you all in advance!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
    Options

    theresa60, I am 'guessing' that they did some genetic testing to pull that combo out? I am not saying it is right or wrong, but the last few years the research has been in this area and based on the genetics of the cancer.

    I think there are some here who may be on this combo, I am not in active treatment, so I hope they pop in.

    However, I did want to come to give you support. I can't imagine what you are feeling. You are in my prayers dear one for strength.

  • theresap60
    theresap60 Member Posts: 6 Member
    Options

    NoTimeForCancer - thank you for your speedy response, your prayers and support!

    By genetic testing, do you mean bio-markers? I'm not 100% sure how to read it, but the pathology results recommended this combo. I am MMR stable but since my cancer didn't respond to chemo, then I became eligible for this treatment. I am also eligible for some trials if this doesn't work. I did genetic testing (blood work) in 2015 and everything was negative.

    You said you are not in active treatment? Are you cancer free now?!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
    Options

    theresap60, if you know you are MMR (p - proficient or d- deficient) is one of those markers that has been very indicative of reacting to the immuneotherapies. IF you should not respond to your current therapy than please consider a trial. (p53 and POLE are also some of the recent markers that have/have not been responding)

    However, I think you point that no treatment is easy, and I appreciate you sharing the side effects you have been dealing with. Every treatment has them and we have not heard enough about these new drugs from those who are using them.

    I am very fortunate to be cancer free for over 10 years. I realize how lucky I am, and continue to visit to support anyone new. I have a seen a lot in the many years I have been here. I was a patient advocate for NCI and know that things have changed but there is so much more to be done.

  • MJS19
    MJS19 Member Posts: 30 Member
    Options

    I'm sorry to hear that you're having side effects and hope they resolve soon.

    Kaeytruda/Lenvima was my doctor's second-choice recommendation for me, with doing chemo again being the first. I have the same cancer that you do. After a lot of discussion with him, I made what was a difficult decision for me to do chemo again. I was seriously considering the drugs, but I'd heard a lot about the side effect of tiredness, and because I have a demanding job I really love, I didn't want to risk that.

    The reason I am answering your post is that you mentioned feeling like you have a death sentence, so I wanted to share with you my gyn/onc's take on that drug combination. He has many patients doing really well on them, including many who have been taking them for quite some time, and the data from the clinical trials didn't last as long as these women have been on them and they are still going strong. Since I decided to do chemo again, I may have some of the details of what he told me not quite correct, but what I am absolutely sure about is that many people are doing very well on them and have been for a long time.

    Fingers crossed that you will be one of them. If it turns out not to be right for you, I hope you can take comfort in knowing that targeted drugs are being developed so quickly that there may already be other options for you.

    Good luck!

  • theresap60
    theresap60 Member Posts: 6 Member
    Options

    NoTimeForCancer - you are very blessed to be cancer free for over 10 years! I hope it continues for you for decades longer!
    I am:
    MMRp (proficient)
    TP53 mutation detected
    POLE not detected
    MSI not detected
    P53 abnormal

    "Previously Reported Results"
    PD-L1 positive (but later in the report it says the PD-L1 biomarker was negative - confusing)

    The pathology report is Greek to me.

    Yes, I will consider a trial. The one that the university GYN/ONC recommended is at the university, so I'd have to live down there until the trial was over. It's too far to drive. That's weighty. I'll cross that bridge if I get there.

  • theresap60
    theresap60 Member Posts: 6 Member
    Options

    MJS19 - thank you for chiming in! I'm sorry to hear that you are struggling with the same type of cancer. I understand why you chose not to use the drugs. It's just amazing how our bodies have XYZ cancer but no two people who have XYZ cancer responds to treatments in the same way. It's frustrating for the patients, but must be frustrating to the doctors and nurses who are trying to find that "just right" treatment for us.

    My oncologist and my niece who is an oncology nurse (elsewhere) said basically the same as your gyn/onc. And the side effects have been more tolerable than chemo for me. I couldn't finish my six rounds of chemo and had to stop at five. I'm also seeing an herbalist who is giving me tinctures to complement my treatment and help with my general health - my doctor is 100% OK with her protocol for me. My bloodwork has been great, so far! I'm just really pain sensitive and am in the dark whether the aches and pains that I feel are from the cancer or the treatment. I'll have a lot of questions at my next visit.

    Should I just continue to report my experiences on this board since there seem to be so few of us on this drug combo with this type of cancer? I feel like I have my backpack on for the journey but am trudging along alone. I really appreciate you two responding.

    On the positive side, I'm retired so when I'm down, I can take care of myself. But most of the time, I can accomplish the things I want to do. I'm taking walks and my oncology group signed me up at the Wellness Center to work with a physical therapist for an exercise program. They also connected me with one of their nutritionists who gave me some good tips on diet. Keeping something on my stomach at all times really helps. My family is a great support system for me, as is my church family. I am blessed!

    My husband is also walking on his own cancer journey (prostate) and it's ugly head has just reared also, so he's on a second line protocol for that. We share our miseries and a few laughs.

    Thank you again!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,398 Member
    Options

    dear, I hate that we have to become knowledgeable (not experts) but aware of these things, but I would recommend asking the doc to spend time explaining it, or asking them WHO can help explain it.

    I will say, researchers want patients to participate, but if you have to cover the cost to live in a different city or travel back and forth is exactly WHY they are not getting participants either. If there are people who hit the criteria, and they know they are out there, they need to do something to make participation possible.

    I am always so impressed by some of the people on the board who research the papers and are so well versed. Please push your doctor to tell you more. ❤️

  • theresap60
    theresap60 Member Posts: 6 Member
    Options

    NoTimeForCancer - you are very blessed to be cancer free for over 10 years! I hope it continues for you for decades longer!
    I am:
    MMRp (proficient)
    TP53 mutation detected
    POLE not detected
    MSI not detected
    P53 abnormal

    "Previously Reported Results"
    PD-L1 positive (but later in the report it says the PD-L1 biomarker was negative - confusing)

    The pathology report is Greek to me.

    Yes, I will consider a trial. The one that the university GYN/ONC recommended is at the university, so I'd have to live down there until the trial was over. It's too far to drive. That's weighty. I'll cross that bridge IF I get there.

    MJS19 - thank you for chiming in! I'm sorry to hear that you are struggling with the same type of cancer. I understand why you chose not to use the drugs. It's just amazing how our bodies have XYZ cancer but no two people who have XYZ cancer responds to treatments in the same way. It's frustrating for the patients, but must be frustrating to the doctors and nurses who are trying to find that "just right" treatment for us.

    My oncologist and my niece who is an oncology nurse (elsewhere) said basically the same as your gyn/onc. And the side effects have been more tolerable than chemo for me. I couldn't finish my six rounds of chemo and had to stop at five. I'm also seeing an herbalist who is giving me tinctures to complement my treatment and help with my general health - my doctor is 100% OK with her protocol for me. My bloodwork has been great, so far! I'm just really pain sensitive and am in the dark whether the aches and pains that I feel are from the cancer or the treatment. I'll have a lot of questions at my next visit.

    Should I just continue to report my experiences on this board since there seem to be so few of us on this drug combo with this type of cancer? I feel like I have my backpack on for the journey but am trudging along alone. I really appreciate you two responding.

    On the positive side, I'm retired so when I'm down, I can take care of myself. But most of the time, I can accomplish the things I want to do. I'm taking walks and my oncology group signed me up at the Wellness Center to work with a physical therapist for an exercise program. They also connected me with one of their nutritionists who gave me some good tips on diet. Keeping something on my stomach at all times really helps. My family is a great support system for me, as is my church family. I am blessed!

    My husband is also walking on his own cancer journey (prostate) and it's ugly head has just reared also, so he's on a second line protocol for that. We share our miseries and a few laughs. But at least we "understand" what we are both going through.

    Thank you both again!

  • theresap60
    theresap60 Member Posts: 6 Member
    Options

    I don't know if the trial will cover living expenses or not, but mine being such a rare type of cancer, you'd think there would be some compensation to get participants.

    I will ask more questions about my reports!

  • ConnieSW
    ConnieSW Member Posts: 1,687 Member
    Options

    Theresa, yes, keep coming and reporting. I, too, felt very isolated till I found this board. When I joined, I read posts that went back a couple years. You may not help someone today or tomorrow but there will come a time when someone will show up who needs to hear your words.

    Good luck

  • heyrayray
    heyrayray Member Posts: 4 Member
    Options

    Theresa -

    I just saw in your original post about your abdominal pain with the Keytruda. I have been on it for almost a year and also had significant abdominal pain at the start. So much so that I was sent for an emergency CT scan. The pain has lessened over time and while I still have some pain after the infusion it is tolerable. I hope your pain lessens with time also.