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Temodar
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Temodar

› Forums › General Melanoma Community › Temodar

  • Post
    • October 11, 2013 at 2:47 am
    Jwfd808
    Participant
      I just started Temodar this week after ipi which helped with my internal organs but I still have many new tumors on the surface of my skin. Which I hope with Temodar and the radiation that it slows this down while I wit to see about getting on a pD1 trial. 3 days and I’m feeling fine have not felt any side effects yet. But I had no side effects on IPI out side of some fatigue once in a while.
      John
    Viewing 5 reply threads
    • Replies
        • October 11, 2013 at 5:41 am
        DeniseK
        Participant

          Hey John,

          I was going to do Temodar but my doctor put me on the MEK/BRAF combo.  I too finished Ipi almost a month ago.  The MEK is helping with my sub q's.  Not sure about my brain yet still waiting on an MRI but I hear that Temodar breaks the brain barrier.  Do you have brain mets?  Are you BRAF negative?  Just wondered why your doctor would choose temodar before MEK/BRAF.  I've heard good things about Temodar so I'm hoping the best for you.

          Denise

            • October 12, 2013 at 11:49 pm
            Jwfd808
            Participant
              Most of my problem seem to be in my skin my internal organs are all clean now. And yes I’m BRAF negative so kind of limits me.
              • October 14, 2013 at 4:39 am
              Sandy11
              Participant

                my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.

                • October 17, 2013 at 2:40 am
                paul Lyons
                Participant

                  Aloha. I took temodar for a year, during which I worked and had few side-effects. When the drug seemed to stop working, most of the skin lessions that were on my face were gone, and the two remaining ones could be taken out surgically. It apparently doesn't work for many, but I was lucky and received a definite benefit.

                  Paul

                  • October 17, 2013 at 2:40 am
                  paul Lyons
                  Participant

                    Aloha. I took temodar for a year, during which I worked and had few side-effects. When the drug seemed to stop working, most of the skin lessions that were on my face were gone, and the two remaining ones could be taken out surgically. It apparently doesn't work for many, but I was lucky and received a definite benefit.

                    Paul

                    • October 17, 2013 at 2:40 am
                    paul Lyons
                    Participant

                      Aloha. I took temodar for a year, during which I worked and had few side-effects. When the drug seemed to stop working, most of the skin lessions that were on my face were gone, and the two remaining ones could be taken out surgically. It apparently doesn't work for many, but I was lucky and received a definite benefit.

                      Paul

                      • October 14, 2013 at 4:39 am
                      Sandy11
                      Participant

                        my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.

                        • October 14, 2013 at 4:39 am
                        Sandy11
                        Participant

                          my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.

                          • October 12, 2013 at 11:49 pm
                          Jwfd808
                          Participant
                            Most of my problem seem to be in my skin my internal organs are all clean now. And yes I’m BRAF negative so kind of limits me.
                            • October 12, 2013 at 11:49 pm
                            Jwfd808
                            Participant
                              Most of my problem seem to be in my skin my internal organs are all clean now. And yes I’m BRAF negative so kind of limits me.
                            • October 11, 2013 at 5:41 am
                            DeniseK
                            Participant

                              Hey John,

                              I was going to do Temodar but my doctor put me on the MEK/BRAF combo.  I too finished Ipi almost a month ago.  The MEK is helping with my sub q's.  Not sure about my brain yet still waiting on an MRI but I hear that Temodar breaks the brain barrier.  Do you have brain mets?  Are you BRAF negative?  Just wondered why your doctor would choose temodar before MEK/BRAF.  I've heard good things about Temodar so I'm hoping the best for you.

                              Denise

                              • October 11, 2013 at 5:41 am
                              DeniseK
                              Participant

                                Hey John,

                                I was going to do Temodar but my doctor put me on the MEK/BRAF combo.  I too finished Ipi almost a month ago.  The MEK is helping with my sub q's.  Not sure about my brain yet still waiting on an MRI but I hear that Temodar breaks the brain barrier.  Do you have brain mets?  Are you BRAF negative?  Just wondered why your doctor would choose temodar before MEK/BRAF.  I've heard good things about Temodar so I'm hoping the best for you.

                                Denise

                                • October 20, 2013 at 12:49 am
                                KRob
                                Participant
                                  Temodar worked well for my internal mets. I was fortunate to have a quick, sustained response of 8 yrs so far.
                                  I did not have surface lesions, but I’m sure it can work for both.
                                  • October 20, 2013 at 12:49 am
                                  KRob
                                  Participant
                                    Temodar worked well for my internal mets. I was fortunate to have a quick, sustained response of 8 yrs so far.
                                    I did not have surface lesions, but I’m sure it can work for both.
                                    • October 20, 2013 at 12:49 am
                                    KRob
                                    Participant
                                      Temodar worked well for my internal mets. I was fortunate to have a quick, sustained response of 8 yrs so far.
                                      I did not have surface lesions, but I’m sure it can work for both.
                                  Viewing 5 reply threads
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