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    rebelkate asked a questionEndometrial (Uterine) Cancer

    May trigger. How to know when enough it's enough?

    7 answers
    • rebelkate's Avatar
      rebelkate

      Thanks for the responses. I'm hoping the new protocol will work great, and everything will be fine. I had good news that I won't have to pay for the Lenvatinib, which is an experimental protocol that has helped improve Keytruda results. But, its hard to discuss this with family, and as I said, I missed my chance with some friends who already went through it and have passed on.

      about 1 month ago
    • 2943's Avatar
      2943

      Many cancer centers have trained oncology psychologist/ psychiatrists who work with patients on their journey. It is well worth the time.

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      @rebelkate, I hope your treatment protocol works well for you and that you find yourself in a place where you are no longer in a place where you feel "enough is enough." We are all rooting for you big time. I totally understand where @LiveWithCancer is coming from about the quality versus quantity of life.
      Now, I want to do my preaching bit on the difficulty of discussing with family. If you have a way to do so, and/or have not already done so, please put your desires down in writing in a way that they will be legally recognized. This will be of great help to you and your family when the time comes that you really do believe that "enough is enough." Think about who you trust to carry out your wishes and make sure they know where your directives are located, whatever those may be. In many cases, it can be conveyed in a Durable Power of Attorney and a Will. Some places require more explicit documents, but you would need to contact someone in your state who specializes in such things.
      I am not trying to worry you with "one more thing" that needs to be done. However, pre-planning can take a lot of worry off of you when the hard decisions come. This is the discussion that no-one ever wants to have. It's the decision that we all put off because we don't want to think about such things. Your post, however, tells me that you definitely have these worries on your mind already. It's better to have them and not need them than to need them and not have them.
      As soon as I got my diagnosis, and I was a Stage 0 DCIS patient, I made sure I had my planning documents in order. I am a planner that way though.

      I hope you don't have to enact any planning tools for a long time. I really do. I hope this new regimen works miracles and you are with us for a long long time.

      about 1 month ago
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    rebelkate shared an experience

    Drug Therapy or Medication: I'm starting Keytruda and Lenvima... hoping to see some results, not just holding steady.

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    rebelkate asked a questionEndometrial (Uterine) Cancer

    Seven years on.... Who else out there has been in treatment for a while?

    7 answers
    • BarbarainBham's Avatar
      BarbarainBham

      Since 2013, I've been prescribed a Gleevec chemo pill to take every day. Although I've missed some, the doctor says I have to take them as long as I want to LIVE. (Side effects like nausea can get worse or cells mutate.)

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Rebelkate,
      One way to look at it is to be thankful that scientists have developed a treatment that works for your cancer, that you are fortunate to be able to afford it, and that the chemo you take is giving you extra years of life that you wouldn't have had without the chemo.

      The chemo pill I take is 80% effective. Eventually it will probably stop working on my body, and there are no substitutes that are as effective. Until about 15 years ago, people with my type of cancer didn't have ANY chemo that worked---all of that to say that my first paragraph to you is factually true.

      Best wishes to you and your mother.

      over 1 year ago
    • Hilkei's Avatar
      Hilkei

      Surgery was the only thing needed for my uterine cancer in 2001.

      But then, in December 2013, I was diagnosed (strangely enough via my routine annual mammogram) with 4th stage Mantle Cell Lymphoma. I immediately started R-CHOP and had 6 months of that, 2 years of Rituxan for maintenance, a year or so of remission and then BAM, the MCL is back.

      Since its return in February 2018, I am on a chemotherapy pill twice a day with 80% remission rates (I am currently one of them). I haven’t missed one pill yet and I swear by them ... they saved/are saving my life. Big lack of energy is the only real side effect I have so I guess I am very lucky.

      I get that a lifetime of treatment can be daunting, but it beats the alternative. I keep going with hobbies and friends. I have online meetings and email groups that keep me connected. I have TV shows I like and always try to keep my spirits up. I am grateful that these treatments exist because each day gives me another opportunity to just be here and experience whatever comes next.

      over 1 year ago
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