will it be too late

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    • May 19, 2011 at 11:18 am
    Terra
    Participant

      Hi, Derek was taken off of his P13K/Mek inhibitor trial in Toronto because the breakdown of a muscle enzyme was too high – we really thought it was doing something, he was on it for a month and was feeling really good. He has been off it for two weeks, we are now waiting for ipi washout period which is 28 days I think this is too long, scans showed lots of melanoma before original trial – 3-4 in bones, inumerable mets in liver, 1 in kideny, and some in muscle, and possibly other places. 

      Hi, Derek was taken off of his P13K/Mek inhibitor trial in Toronto because the breakdown of a muscle enzyme was too high – we really thought it was doing something, he was on it for a month and was feeling really good. He has been off it for two weeks, we are now waiting for ipi washout period which is 28 days I think this is too long, scans showed lots of melanoma before original trial – 3-4 in bones, inumerable mets in liver, 1 in kideny, and some in muscle, and possibly other places. 

      Very afraid of brain mets.  Derek is taking small naps here and there, eating well, doing some light work at home and our rental properties. I guess you can't tell looking at him what is happening, he does seem to be very forgetful which is not like him at all, but I just don't know what to do in the meantime while we are waiting – Should I push for sommething in the next two weeks or I guess the wash out period is for anything any drug (we are in Canada and so yervoy is not registered yet.)

      I know there are many people in similar situations – I am thinking of all of you.  

       

      TErra

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    • Replies
        • May 19, 2011 at 12:30 pm
        FormerCaregiver
        Participant

          Your concerns about brain mets are very understandable. However, the fact that Derek is
          eating well and is doing some light work are really good signs. I don't feel that there is any
          reason to change what you have been doing unless his symptoms change or get worse.

          Please don't hesitate to let us know if you have any further worries. It can certainly be a
          challenge to be a caregiver.

          Hope this helps.

          Frank from Australia

          • May 19, 2011 at 12:30 pm
          FormerCaregiver
          Participant

            Your concerns about brain mets are very understandable. However, the fact that Derek is
            eating well and is doing some light work are really good signs. I don't feel that there is any
            reason to change what you have been doing unless his symptoms change or get worse.

            Please don't hesitate to let us know if you have any further worries. It can certainly be a
            challenge to be a caregiver.

            Hope this helps.

            Frank from Australia

              • May 19, 2011 at 3:19 pm
              Terra
              Participant

                Thank-you very much Frank, that is what i have been thinking.  He is in Toronto getting a scan today and tomorrow.  So I guess very soon we will hear.  My imagination runs wild sometimes.  I am just praying he is a responder to ipi and.or he is accepted into the TIL trial inWashington with NCI – and, of course, that the next two weeks goes by very very fast.

                I know he is only hoping to buy enough time to see our oldest start kindergarten this September while I am still hoping for decades.

                • May 19, 2011 at 3:19 pm
                Terra
                Participant

                  Thank-you very much Frank, that is what i have been thinking.  He is in Toronto getting a scan today and tomorrow.  So I guess very soon we will hear.  My imagination runs wild sometimes.  I am just praying he is a responder to ipi and.or he is accepted into the TIL trial inWashington with NCI – and, of course, that the next two weeks goes by very very fast.

                  I know he is only hoping to buy enough time to see our oldest start kindergarten this September while I am still hoping for decades.

                  • May 19, 2011 at 6:33 pm
                  lhaley
                  Participant

                    Terra,

                    Has Derek had his HLA factors tested?  It's a blood test. The reason I'm asking is I believe that NCI wants the hla2 positive for their Til trial where MD Anderson takes positive or negative.  This could have changed but you might want to look into it so if needed you won't have the delay factor again.

                    Your having such a difficult time with the hardship of Derek's health and the joy of having a child. My thoughts are with you for a healthy delivery.

                    Linda

                    • May 19, 2011 at 6:33 pm
                    lhaley
                    Participant

                      Terra,

                      Has Derek had his HLA factors tested?  It's a blood test. The reason I'm asking is I believe that NCI wants the hla2 positive for their Til trial where MD Anderson takes positive or negative.  This could have changed but you might want to look into it so if needed you won't have the delay factor again.

                      Your having such a difficult time with the hardship of Derek's health and the joy of having a child. My thoughts are with you for a healthy delivery.

                      Linda

                      • May 19, 2011 at 11:59 pm
                      Terra
                      Participant

                        Thank-you so much Linda.  Our onc is very helpful an did looking into TIL for us and some of the arrangements.  We should hear back from him soon.  The baby is due June 16 so we hopefully have a little bit of time – although it the third so who knows.

                        • May 19, 2011 at 11:59 pm
                        Terra
                        Participant

                          Thank-you so much Linda.  Our onc is very helpful an did looking into TIL for us and some of the arrangements.  We should hear back from him soon.  The baby is due June 16 so we hopefully have a little bit of time – although it the third so who knows.

                          • May 20, 2011 at 2:30 am
                          FormerCaregiver
                          Participant

                            It is really easy for one's imagination to run wild at times like these. However, please try not
                            to get overwhelmed by all this. Remember that the treatment plan has been well worked out.

                            I am interested in the TIL trial, and think that this sort of treatment holds a great deal of
                            promise for all melanoma warriors. Of course, Yervoy (ipi) also has a lot of potential in this
                            situation.

                            My thoughts and prayers are with you and Derek.

                            Frank from Australia

                            • May 20, 2011 at 2:30 am
                            FormerCaregiver
                            Participant

                              It is really easy for one's imagination to run wild at times like these. However, please try not
                              to get overwhelmed by all this. Remember that the treatment plan has been well worked out.

                              I am interested in the TIL trial, and think that this sort of treatment holds a great deal of
                              promise for all melanoma warriors. Of course, Yervoy (ipi) also has a lot of potential in this
                              situation.

                              My thoughts and prayers are with you and Derek.

                              Frank from Australia

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