How long can you stay on Dex?

› Forums › General Melanoma Community › How long can you stay on Dex?

  • Post
    • February 1, 2017 at 11:23 pm
    Shaneswife
    Participant
      My poor husband has had set back after setback. His tremors and headaches and cramping just won’t go away. He was on a dex taper and they just increased back to 8mg from 1mg and the headache went but not the tremors. Also unable to eat. Gets an immediate feeling of fullness. But liquids go down ok. Onc believes that one of the brain tumors or inflamation surrounding a tumor is causing his brain to incorrectly interpret signals from his stomach. So they keep increasing the steroids. He’s been on 16mgs since November except for the taper the past few weeks. Realistically how long can you stay on high dose dex?

      PS they stopped his dabrafenib and tramentinib because of all the symptoms and vision changes.

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    • Replies
        • February 2, 2017 at 5:27 pm
        Patrisa
        Participant

          Dear shaneswife,

          You really don't seem to catch a break, that is just so unfair… 

          Don't have an answer for you, but know that i'm rooting for you guys, hoping you find a way to get your husband a successful treatment…

          Love,

          Patrisa

          • February 2, 2017 at 5:27 pm
          Patrisa
          Participant

            Dear shaneswife,

            You really don't seem to catch a break, that is just so unfair… 

            Don't have an answer for you, but know that i'm rooting for you guys, hoping you find a way to get your husband a successful treatment…

            Love,

            Patrisa

            • February 2, 2017 at 5:27 pm
            Patrisa
            Participant

              Dear shaneswife,

              You really don't seem to catch a break, that is just so unfair… 

              Don't have an answer for you, but know that i'm rooting for you guys, hoping you find a way to get your husband a successful treatment…

              Love,

              Patrisa

              • February 3, 2017 at 3:14 pm
              cancersnewnormal
              Participant

                Oh my goodness, how frustrating for you both. 🙁  Brain edema surrounding lesions can be unpredictable. Sometimes it resolves quickly, but other lesions like to continue to swell after radiation. It can be quite frightening. Decadron is no fun. It crushed my appetite, as well as altering the taste of foods. But alas, it is a necessary evil for combatting swelling. Has his medical oncologist sought a neurooncology opinion… or perhaps neurosurgical? Not that one wants to go jumping into the idea of brain surgery (even the minimally invasive "Keyhole")… but IF… if there is one lesion making all the trouble, and the dex doesn't begin to ease the issue… it may be nice to have additional input and professional opinions. Big hugs and best wishes that his lesions start stepping in line sooner, rather than later!

                • February 3, 2017 at 3:14 pm
                cancersnewnormal
                Participant

                  Oh my goodness, how frustrating for you both. 🙁  Brain edema surrounding lesions can be unpredictable. Sometimes it resolves quickly, but other lesions like to continue to swell after radiation. It can be quite frightening. Decadron is no fun. It crushed my appetite, as well as altering the taste of foods. But alas, it is a necessary evil for combatting swelling. Has his medical oncologist sought a neurooncology opinion… or perhaps neurosurgical? Not that one wants to go jumping into the idea of brain surgery (even the minimally invasive "Keyhole")… but IF… if there is one lesion making all the trouble, and the dex doesn't begin to ease the issue… it may be nice to have additional input and professional opinions. Big hugs and best wishes that his lesions start stepping in line sooner, rather than later!

                  • February 3, 2017 at 3:14 pm
                  cancersnewnormal
                  Participant

                    Oh my goodness, how frustrating for you both. 🙁  Brain edema surrounding lesions can be unpredictable. Sometimes it resolves quickly, but other lesions like to continue to swell after radiation. It can be quite frightening. Decadron is no fun. It crushed my appetite, as well as altering the taste of foods. But alas, it is a necessary evil for combatting swelling. Has his medical oncologist sought a neurooncology opinion… or perhaps neurosurgical? Not that one wants to go jumping into the idea of brain surgery (even the minimally invasive "Keyhole")… but IF… if there is one lesion making all the trouble, and the dex doesn't begin to ease the issue… it may be nice to have additional input and professional opinions. Big hugs and best wishes that his lesions start stepping in line sooner, rather than later!

                    • February 3, 2017 at 6:32 pm
                    Shaneswife
                    Participant
                      Thank you both for your replies. Still having no luck over here. Still unable to eat more than a 2 year old would eat, so small progress there. Steroids have helped some in that respect. Still off the braf mek combo. Hoping to restart by Monday.

                      Janis

                      • February 3, 2017 at 6:32 pm
                      Shaneswife
                      Participant
                        Thank you both for your replies. Still having no luck over here. Still unable to eat more than a 2 year old would eat, so small progress there. Steroids have helped some in that respect. Still off the braf mek combo. Hoping to restart by Monday.

                        Janis

                        • February 3, 2017 at 6:32 pm
                        Shaneswife
                        Participant
                          Thank you both for your replies. Still having no luck over here. Still unable to eat more than a 2 year old would eat, so small progress there. Steroids have helped some in that respect. Still off the braf mek combo. Hoping to restart by Monday.

                          Janis

                          • February 4, 2017 at 3:18 am
                          casagrayson
                          Participant

                            Janis, have your doctors considered putting Shane on hydrocortisone instead of dex?  It mimics the body's natural production of steroids better than dex or prednisone.  I don't know if it would make things easier, but it might be worth asking the question.

                            • February 4, 2017 at 3:18 am
                            casagrayson
                            Participant

                              Janis, have your doctors considered putting Shane on hydrocortisone instead of dex?  It mimics the body's natural production of steroids better than dex or prednisone.  I don't know if it would make things easier, but it might be worth asking the question.

                              • February 4, 2017 at 3:18 am
                              casagrayson
                              Participant

                                Janis, have your doctors considered putting Shane on hydrocortisone instead of dex?  It mimics the body's natural production of steroids better than dex or prednisone.  I don't know if it would make things easier, but it might be worth asking the question.

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