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Sorry been MIA for so long…

› Forums › General Melanoma Community › Sorry been MIA for so long…

  • Post
    • September 20, 2012 at 3:28 am
    himynameiskevin
    Participant

      It's been pretty rough times, with the WBR and this steroid they've got me on. Luckily I'm tapering off, should be off completely by the end of the month I think. Hopefully I won't have too many withdrawal symptoms, I've had quite a bit of lower back/adrenal gland pain? Not sure but only occurs when I get stressed real quick. Also tons of fatigue, you know the steroid causes insomnia and basically a restless body syndrome. So that on top of the WBR. Oh just tireeddd and fatigued.. Just want my body to shift back to some what normal.

      It's been pretty rough times, with the WBR and this steroid they've got me on. Luckily I'm tapering off, should be off completely by the end of the month I think. Hopefully I won't have too many withdrawal symptoms, I've had quite a bit of lower back/adrenal gland pain? Not sure but only occurs when I get stressed real quick. Also tons of fatigue, you know the steroid causes insomnia and basically a restless body syndrome. So that on top of the WBR. Oh just tireeddd and fatigued.. Just want my body to shift back to some what normal. By the way I have a Pet Scan within the next week and an MRI of my brain on the first. Hope. Sorry if I seem a little out of it and not quite myself, I guess I'm not right now.  :/   😉 As far as therapies, for the time being I'm on 120mg of temodar once a day. So far so so good. With hopes to keep things stable and maybe try IL-2 again since it "kinda" worked once.

      I truly love you all. Thanks for being there.

      -Kevin

    Viewing 29 reply threads
    • Replies
        • September 20, 2012 at 4:15 am
        JerryfromFauq
        Participant

          Know what you mean!  Hate that tired rundown feeling.  So much better when one gets past that!

          • September 20, 2012 at 4:15 am
          JerryfromFauq
          Participant

            Know what you mean!  Hate that tired rundown feeling.  So much better when one gets past that!

            • September 20, 2012 at 4:15 am
            JerryfromFauq
            Participant

              Know what you mean!  Hate that tired rundown feeling.  So much better when one gets past that!

              • September 20, 2012 at 4:41 am
              lhaley
              Participant

                Kevin,

                I was wondering how you were doing.  The steroids to terrible things to you.  Tomorrow they are weaning me to 1 mg.  Everytime I see the Dr it's the first thing I say to him.   

                Hoping that next weeks scans show are stable.  Rest your body.  I've always found that after being on a high amount of steroids I am so tired when they are weaning me and for a few weeks after I'm off.  All of a sudden I start to feel better and I'm sure you will also.  Everyday make sure to move as much as you can so that the steroids doesn't hurt your muscle mass.

                Linda

                • September 20, 2012 at 4:41 am
                lhaley
                Participant

                  Kevin,

                  I was wondering how you were doing.  The steroids to terrible things to you.  Tomorrow they are weaning me to 1 mg.  Everytime I see the Dr it's the first thing I say to him.   

                  Hoping that next weeks scans show are stable.  Rest your body.  I've always found that after being on a high amount of steroids I am so tired when they are weaning me and for a few weeks after I'm off.  All of a sudden I start to feel better and I'm sure you will also.  Everyday make sure to move as much as you can so that the steroids doesn't hurt your muscle mass.

                  Linda

                  • September 20, 2012 at 4:41 am
                  lhaley
                  Participant

                    Kevin,

                    I was wondering how you were doing.  The steroids to terrible things to you.  Tomorrow they are weaning me to 1 mg.  Everytime I see the Dr it's the first thing I say to him.   

                    Hoping that next weeks scans show are stable.  Rest your body.  I've always found that after being on a high amount of steroids I am so tired when they are weaning me and for a few weeks after I'm off.  All of a sudden I start to feel better and I'm sure you will also.  Everyday make sure to move as much as you can so that the steroids doesn't hurt your muscle mass.

                    Linda

                    • September 20, 2012 at 11:17 am
                    mom3girlsFL
                    Participant

                      HHHEEEEYYYY Kevin!

                      So glad to see you post, been thinking about you….I am so sorry things have been tough but please know there are LOTS of us pulling for you!  You have a fantastic attitude and awesome outlook on things and you WILL get through this!  Sending best of luck and well wishes for a fabulous PET!  Let us know how it goes.

                      :)Laurie

                      • September 20, 2012 at 11:17 am
                      mom3girlsFL
                      Participant

                        HHHEEEEYYYY Kevin!

                        So glad to see you post, been thinking about you….I am so sorry things have been tough but please know there are LOTS of us pulling for you!  You have a fantastic attitude and awesome outlook on things and you WILL get through this!  Sending best of luck and well wishes for a fabulous PET!  Let us know how it goes.

                        :)Laurie

                        • September 20, 2012 at 11:17 am
                        mom3girlsFL
                        Participant

                          HHHEEEEYYYY Kevin!

                          So glad to see you post, been thinking about you….I am so sorry things have been tough but please know there are LOTS of us pulling for you!  You have a fantastic attitude and awesome outlook on things and you WILL get through this!  Sending best of luck and well wishes for a fabulous PET!  Let us know how it goes.

                          :)Laurie

                          • September 20, 2012 at 1:05 pm
                          Richard_K
                          Participant

                             

                            Kevin

                            Glad to hear from you but sorry about how you are feeling.  I too hope your scans will be good.

                            Dick

                            • September 20, 2012 at 1:05 pm
                            Richard_K
                            Participant

                               

                              Kevin

                              Glad to hear from you but sorry about how you are feeling.  I too hope your scans will be good.

                              Dick

                              • September 20, 2012 at 1:05 pm
                              Richard_K
                              Participant

                                 

                                Kevin

                                Glad to hear from you but sorry about how you are feeling.  I too hope your scans will be good.

                                Dick

                                • September 20, 2012 at 5:50 pm
                                killmel
                                Participant

                                  Hi Kevin,

                                   

                                  I was so happy to see your post giving us an update. You are a fighter.

                                  In case you missed this article about why chemo does not work on melanoma cells, you should read it so you are informed to help you pick your next treatment:

                                  http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                                  I will keep praying for you

                                  Mary

                                  • September 20, 2012 at 5:50 pm
                                  killmel
                                  Participant

                                    Hi Kevin,

                                     

                                    I was so happy to see your post giving us an update. You are a fighter.

                                    In case you missed this article about why chemo does not work on melanoma cells, you should read it so you are informed to help you pick your next treatment:

                                    http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                                    I will keep praying for you

                                    Mary

                                      • September 20, 2012 at 9:16 pm
                                      deardad
                                      Participant

                                        Dear Kevin,

                                        Yeah the WBR and temador really knocks you around. My dad was at his worst on this stuff. I hope it gives you some stability.

                                        Hoping for great scan results.

                                        Hang in there.

                                        Nahmi from Melbourne

                                        • September 20, 2012 at 9:16 pm
                                        deardad
                                        Participant

                                          Dear Kevin,

                                          Yeah the WBR and temador really knocks you around. My dad was at his worst on this stuff. I hope it gives you some stability.

                                          Hoping for great scan results.

                                          Hang in there.

                                          Nahmi from Melbourne

                                          • September 20, 2012 at 9:16 pm
                                          deardad
                                          Participant

                                            Dear Kevin,

                                            Yeah the WBR and temador really knocks you around. My dad was at his worst on this stuff. I hope it gives you some stability.

                                            Hoping for great scan results.

                                            Hang in there.

                                            Nahmi from Melbourne

                                          • September 20, 2012 at 5:50 pm
                                          killmel
                                          Participant

                                            Hi Kevin,

                                             

                                            I was so happy to see your post giving us an update. You are a fighter.

                                            In case you missed this article about why chemo does not work on melanoma cells, you should read it so you are informed to help you pick your next treatment:

                                            http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                                            I will keep praying for you

                                            Mary

                                            • September 21, 2012 at 1:20 am
                                            awillett1991
                                            Participant
                                              I have been following your story and was just wondering how you are doing. Thanks so much for posting. Many prayers and good thoughts your way for good scans!
                                              • September 21, 2012 at 1:20 am
                                              awillett1991
                                              Participant
                                                I have been following your story and was just wondering how you are doing. Thanks so much for posting. Many prayers and good thoughts your way for good scans!
                                                • September 21, 2012 at 1:20 am
                                                awillett1991
                                                Participant
                                                  I have been following your story and was just wondering how you are doing. Thanks so much for posting. Many prayers and good thoughts your way for good scans!
                                                  • September 21, 2012 at 8:31 pm
                                                  rosa1
                                                  Participant
                                                    Hi Kevin,

                                                    I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                    Rosa

                                                    • September 21, 2012 at 8:31 pm
                                                    rosa1
                                                    Participant
                                                      Hi Kevin,

                                                      I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                      Rosa

                                                      • September 21, 2012 at 8:31 pm
                                                      rosa1
                                                      Participant
                                                        Hi Kevin,

                                                        I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                        Rosa

                                                        • September 21, 2012 at 8:32 pm
                                                        rosa1
                                                        Participant
                                                          Hi Kevin,

                                                          I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                          Rosa

                                                          • September 21, 2012 at 8:32 pm
                                                          rosa1
                                                          Participant
                                                            Hi Kevin,

                                                            I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                            Rosa

                                                            • September 21, 2012 at 8:32 pm
                                                            rosa1
                                                            Participant
                                                              Hi Kevin,

                                                              I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                              Rosa

                                                              • September 21, 2012 at 8:33 pm
                                                              rosa1
                                                              Participant
                                                                Hi Kevin,

                                                                I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                                Rosa

                                                                • September 21, 2012 at 8:33 pm
                                                                rosa1
                                                                Participant
                                                                  Hi Kevin,

                                                                  I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                                  Rosa

                                                                  • September 21, 2012 at 8:33 pm
                                                                  rosa1
                                                                  Participant
                                                                    Hi Kevin,

                                                                    I have following your story and I think you are an extraordinary young man. I truly wish you all the best because you deserve it. Keep the faith and God bless!

                                                                    Rosa

                                                                    • September 22, 2012 at 2:21 pm
                                                                    Laurie from maine
                                                                    Participant
                                                                      Kevin
                                                                      I have heard steroids are tough, necessary but tough I hope you can get off them and start to feel better, insomnia is tough I think we all understand the fatigue and the FRUSTRATION of just sitting around waiting to heal. Very hard but again necessary
                                                                      Keep us posted on PET scan and MRI- fingers crossed for good news
                                                                      We are all here for you – you take care
                                                                      Thinking and praying you feel “normal” soon
                                                                      Laurie from Maine
                                                                      • September 22, 2012 at 2:21 pm
                                                                      Laurie from maine
                                                                      Participant
                                                                        Kevin
                                                                        I have heard steroids are tough, necessary but tough I hope you can get off them and start to feel better, insomnia is tough I think we all understand the fatigue and the FRUSTRATION of just sitting around waiting to heal. Very hard but again necessary
                                                                        Keep us posted on PET scan and MRI- fingers crossed for good news
                                                                        We are all here for you – you take care
                                                                        Thinking and praying you feel “normal” soon
                                                                        Laurie from Maine
                                                                        • September 22, 2012 at 2:21 pm
                                                                        Laurie from maine
                                                                        Participant
                                                                          Kevin
                                                                          I have heard steroids are tough, necessary but tough I hope you can get off them and start to feel better, insomnia is tough I think we all understand the fatigue and the FRUSTRATION of just sitting around waiting to heal. Very hard but again necessary
                                                                          Keep us posted on PET scan and MRI- fingers crossed for good news
                                                                          We are all here for you – you take care
                                                                          Thinking and praying you feel “normal” soon
                                                                          Laurie from Maine
                                                                      Viewing 29 reply threads
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