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Anyone with some experience with Steriods – Dexametheisone for brain mets

Forums General Melanoma Community Anyone with some experience with Steriods – Dexametheisone for brain mets

  • Post
    deardad
    Participant

      Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

      Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

      The onc said it might help, but didn't recommend it? I don't get that….and in the heat of the conversation we came out not knowing whether it was an option or not…he just didn't recommend it.

      We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

      Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

      Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

      The onc said it might help, but didn't recommend it? I don't get that….and in the heat of the conversation we came out not knowing whether it was an option or not…he just didn't recommend it.

      We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

      Dad's appetite was great a week ago now its a battle for him to eat…..I think that's more about loosing his sense of taste.

      We are caring for him at home, he is still lucid and his old self personality wise but as I posted earlier on he is now in a wheelchair, experiencing mild blurred vision and dizziness. He slips in and out of nodding off, but when stimulated can concentrate and engage in conversation for over an hour.

      What a horrid, vicious cancer……

      Nahmi from Melbourne

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    • Replies
        awillett1991
        Participant
          I’ve been on prednisone sine April, at one point up to 80 mg a day, now down to 5mg a day, all to deal with side effects of Zel. The higher the dose, the more jittery, anxious, and paranoid I was, also had painful acid indigestion and some vomiting. Even on 5 mg I still have insomnia most nights. Could it be that your doc thinks the side effects might outweigh the benefits at a higher dose?

          Sorry you have to go through this. My dad had brain mets too and unfortunately nothing really helped him. He is at peace now though.

          awillett1991
          Participant
            I’ve been on prednisone sine April, at one point up to 80 mg a day, now down to 5mg a day, all to deal with side effects of Zel. The higher the dose, the more jittery, anxious, and paranoid I was, also had painful acid indigestion and some vomiting. Even on 5 mg I still have insomnia most nights. Could it be that your doc thinks the side effects might outweigh the benefits at a higher dose?

            Sorry you have to go through this. My dad had brain mets too and unfortunately nothing really helped him. He is at peace now though.

            awillett1991
            Participant
              I’ve been on prednisone sine April, at one point up to 80 mg a day, now down to 5mg a day, all to deal with side effects of Zel. The higher the dose, the more jittery, anxious, and paranoid I was, also had painful acid indigestion and some vomiting. Even on 5 mg I still have insomnia most nights. Could it be that your doc thinks the side effects might outweigh the benefits at a higher dose?

              Sorry you have to go through this. My dad had brain mets too and unfortunately nothing really helped him. He is at peace now though.

              FormerCaregiver
              Participant

                Nahmi, I think that it is wise to be guided by what the oncologist has said. Although a temporary increase in the dosage probably wouldn't be harmful, it could exacerbate any interactions with the other medications that your dad is taking.

                Do you have a contingency plan if your dad's condition suddenly worsens? I know that your mum is determined to care for him at home. I also tried to do this with my wife. However, in her final week she became confused and delirious and I was grateful that she could be admitted to a private hospital so that appropriate strength medications could be given.

                Take care

                Frank from Australia

                FormerCaregiver
                Participant

                  Nahmi, I think that it is wise to be guided by what the oncologist has said. Although a temporary increase in the dosage probably wouldn't be harmful, it could exacerbate any interactions with the other medications that your dad is taking.

                  Do you have a contingency plan if your dad's condition suddenly worsens? I know that your mum is determined to care for him at home. I also tried to do this with my wife. However, in her final week she became confused and delirious and I was grateful that she could be admitted to a private hospital so that appropriate strength medications could be given.

                  Take care

                  Frank from Australia

                  FormerCaregiver
                  Participant

                    Nahmi, I think that it is wise to be guided by what the oncologist has said. Although a temporary increase in the dosage probably wouldn't be harmful, it could exacerbate any interactions with the other medications that your dad is taking.

                    Do you have a contingency plan if your dad's condition suddenly worsens? I know that your mum is determined to care for him at home. I also tried to do this with my wife. However, in her final week she became confused and delirious and I was grateful that she could be admitted to a private hospital so that appropriate strength medications could be given.

                    Take care

                    Frank from Australia

                    hopefortomorrow
                    Participant

                      I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

                        JC
                        Participant

                          hopefortomorrow, I read your profile and more than anything else that is what scares me – cause everyone, including doctors, say "don't worry" about Stage I melanomas 0.58mm thick like your mom's was.  It is something to worry about and take seriously.  Or, they say, must be a mistake in pathology if it was that thin but spread, etc….  no, not all are mistakes in pathology, some that thin really do spread.

                          hopefortomorrow
                          Participant

                            Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.

                            hopefortomorrow
                            Participant

                              Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.

                              hopefortomorrow
                              Participant

                                Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.

                                JC
                                Participant

                                  hopefortomorrow, I read your profile and more than anything else that is what scares me – cause everyone, including doctors, say "don't worry" about Stage I melanomas 0.58mm thick like your mom's was.  It is something to worry about and take seriously.  Or, they say, must be a mistake in pathology if it was that thin but spread, etc….  no, not all are mistakes in pathology, some that thin really do spread.

                                  JC
                                  Participant

                                    hopefortomorrow, I read your profile and more than anything else that is what scares me – cause everyone, including doctors, say "don't worry" about Stage I melanomas 0.58mm thick like your mom's was.  It is something to worry about and take seriously.  Or, they say, must be a mistake in pathology if it was that thin but spread, etc….  no, not all are mistakes in pathology, some that thin really do spread.

                                  hopefortomorrow
                                  Participant

                                    I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

                                    hopefortomorrow
                                    Participant

                                      I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

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