Endometrial Serous Carcinoma stage 3C

Options
124»

Comments

  • feb11gal
    feb11gal Member Posts: 16 Member
    #62
    Options

    Thank you, wasn't sure if it was too long, hope it helps someone.

    An up-date: After a few more phone calls and follow up I will be receiving my medicine today from novartis.

    I was approved for their financial assistance so qualify for the rest of the year.

    Feb11gal

  • Miha
    Miha Member Posts: 33 Member
    #63
    Options

    Hello, and thank you for the encouraging words. I truly appreciated.

    I have started lenvima and pembrolizumab two weeks ago. Blood pressure very high and I am exhausted daily, i can hardly walk. Constant abdominal pain.

    I would like to know if others are on immunotherapy and how are they doing.

    Thank you so much

  • feb11gal
    feb11gal Member Posts: 16 Member
    #64
    Options

    Miha

    Please let your doctors know about the abdominal pain right away and what your blood pressure is.

    I am on a targeted therapy, rather than immunotherapy, but my doctors wanted me to know about any unusual symptoms I experienced and I am sure your doctors would want to know about your abdominal pain right away.

    Bless you, Feb11gal

  • Miha
    Miha Member Posts: 33 Member
    #65
    Options

    Thank you so much for taking the time and write. I appreciate every single word of wisdom and encouragement.

    Yes, I have let them know. I was put on stronger pain killers, and we increased the BP meds to the maximum. Very fatigued today, in bed, zero appetite lots of abdominal pain. I would truly appreciate if others on the same meds can talk about their experiences with immunotherapy. Thank you so much!

  • MoeKay
    MoeKay Member Posts: 477 Member
    #66
    Options

    Hi Miha,

    I do know that my childhood friend, who has been on Keytruda since July 2020, had to discontinue Lenvima due to issues she had with her blood pressure. (I mentioned my friend in Post #38 above). Her oncologist first tried reducing the dose of Lenvima. I believe she started on 14 mg. and the first reduction was to 10 mg. However, her BP was still out of control, so another dose reduction was made to 4 mg., but she still was not able to get her BP under adequate control. Her cardiologist had her on about 5 BP medications while she was on Lenvima, but she still was having BP issues, as well as other side effects from the multiple medications.

    As I mentioned in my above post, however, my friend has been on Keytruda alone for a while now, and her last several CT scans have shown no evidence of cancer--something that none of the prior treatments she was on was able to accomplish since she was diagnosed in 2017. In July of this year it will be 3 years since she started Keytruda, and her oncologist said he will discontinue the Keytruda at that point.

    I hope you have similar results to those of my childhood friend!!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,370 Member
    #67
    Options
    https://csn.cancer.org/discussion/comment/1704477#Comment_1704477

    MoeKay, please continue to let us know how your friend is doing. Immunotherapy is so new that we are all still learning so much. I am curious if she has had success with it how she feels about going to be taken off of it?

  • Miha
    Miha Member Posts: 33 Member
    #68
    Options

    Thank you so much for your response MoeKay. Yes, I am on 5 BP meds all at the max dosage. Very low mutational burden and I have to be on both immunotherapy meds. I remain hopeful this meds are going to help me have a little more time with my family and I pray that one day, I can report to you that I am NED! God Bless Everyone.

  • MoeKay
    MoeKay Member Posts: 477 Member
    #69
    Options
    https://csn.cancer.org/discussion/comment/1704482#Comment_1704482

    Hi NoTime, I didn't ask that question directly, but based on our recent conversation, I think her feelings may be somewhat mixed. She's been undergoing one treatment regimen or another for close to 6 years now, so having a break from trips to the infusion center every 3 weeks will be wonderful. I know she's been putting off cataract surgery until after she finishes up with Keytruda in July. She also experiences side effects from the Keytruda infusions, such as fatigue, muscle aches, and rash. It will be nice to say goodbye to that!

    I suspect, though, that not going for those infusions will be somewhat unsettling, at least for a while to see how things go. Fortunately, since the beginning, she's been under the care of one of the country's top gyn-onc's and completely trusts his medical judgment.

  • Lasha12
    Lasha12 Member Posts: 20 Member
    #70
    Options
    https://csn.cancer.org/discussion/comment/1701288#Comment_1701288

    Hi, I live in Maine and would love a free 2nd opinion, are there other organizations that help with that? Thank you, Madeline

Discussion Boards