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It’s Zelboraf
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It’s Zelboraf

› Forums › General Melanoma Community › It’s Zelboraf

  • Post
    • December 22, 2012 at 1:57 pm
    Owl
    Participant

      Dear all,

      I posted a couple of weeks ago and got really good input from you, thanks again!

      Dear all,

      I posted a couple of weeks ago and got really good input from you, thanks again!

      My husband only had a partial response on Ipi (mets in lung, testicle and subqs disappeared, mets in neck area, parotis and 3 lymph nodes in abdomen left and progressing). We had a lot of discussions with the doctors since then. In the last weeks we experencied that doctors are only humans, make mistake, don't look at the whole picture etc. Luckily we moved home and have changed treatment center, which is now Kiel, Germany. The doctors there have been very helpful and were willing to discuss any options possible. The result is that they don't trust in a reinduction of Ipi, surgery would have no real benefits as the risks are to high for facial nerves and surgents are sure that tumors will come back. Finally my husband decided to start Zelboraf as it was recommended by the doctors. So he did last Wednesday. They did another CT staging Friday as the other one was 4 weeks old. CT shows only one met in abdomen (same size as 4 weeks ago) but two others (that were mentioned for the first time in CT of November) of at least 10mm had disappeared. Neck and parotis mets are also the same. This sounds very confusing to us because we do not believe that Z lets two mets disappear in between 2 days and all others have not changed. Unfortunately CT wasn't done at the same place as in November, so there was no comparison done. Well, nonetheless we hope the Z works well and we will ask doctors to make the comparison in January in order to understand what is going on.

      Most of you know how hard these kind of discussions are and we just hope some calm days next week with our little daughter. She just turned one last Wednesday.

      Wish you a peaceful christmas time!

      Jenny

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    • Replies
        • December 22, 2012 at 2:34 pm
        sharmon
        Participant

          I am not an expert, only the wife of a survivor.  It sounds to me that the IPI might still be working,  It is possible for him to be a partial responder and a late resonder (meaning the ipi has helped the immune systerm reconize the cancer and the immune system is continuing to do its job).  There are many wonderful folks here that can comment better than I,  I just wanted to know we are here for you.  Praying for you and your family this Christmas Season,  Sharmon

            • December 22, 2012 at 3:00 pm
            POW
            Participant

              Sharmon is correct. The good thing about ipi is that it is an immunological treatment. That means that it continues to work and continues to shrink tumors for months or even years after you stop taking it. Zelboraf, on the other hand, is a chemical that specifically targets melanoma cells. It works quickly (witnin weeks) but the tumors usually become resistant after a  while.

              So it's possible that the different responses you are seeing in the different tumors are a result of the timing of the CT scans. It is also possible that both CT scans are correct– some tumors are still shrinking in response to the ipi, and others will (hopefully) respond to the Zelboraf.

              It sounds like you have an excellent treatment team and a good plan. This may well be the combination your husband needs to BEAT THE BEAST! Be patient. Remain optimistic. And have a wonderful holiday season! 

              • December 22, 2012 at 3:00 pm
              POW
              Participant

                Sharmon is correct. The good thing about ipi is that it is an immunological treatment. That means that it continues to work and continues to shrink tumors for months or even years after you stop taking it. Zelboraf, on the other hand, is a chemical that specifically targets melanoma cells. It works quickly (witnin weeks) but the tumors usually become resistant after a  while.

                So it's possible that the different responses you are seeing in the different tumors are a result of the timing of the CT scans. It is also possible that both CT scans are correct– some tumors are still shrinking in response to the ipi, and others will (hopefully) respond to the Zelboraf.

                It sounds like you have an excellent treatment team and a good plan. This may well be the combination your husband needs to BEAT THE BEAST! Be patient. Remain optimistic. And have a wonderful holiday season! 

                • December 22, 2012 at 3:00 pm
                POW
                Participant

                  Sharmon is correct. The good thing about ipi is that it is an immunological treatment. That means that it continues to work and continues to shrink tumors for months or even years after you stop taking it. Zelboraf, on the other hand, is a chemical that specifically targets melanoma cells. It works quickly (witnin weeks) but the tumors usually become resistant after a  while.

                  So it's possible that the different responses you are seeing in the different tumors are a result of the timing of the CT scans. It is also possible that both CT scans are correct– some tumors are still shrinking in response to the ipi, and others will (hopefully) respond to the Zelboraf.

                  It sounds like you have an excellent treatment team and a good plan. This may well be the combination your husband needs to BEAT THE BEAST! Be patient. Remain optimistic. And have a wonderful holiday season! 

                • December 22, 2012 at 2:34 pm
                sharmon
                Participant

                  I am not an expert, only the wife of a survivor.  It sounds to me that the IPI might still be working,  It is possible for him to be a partial responder and a late resonder (meaning the ipi has helped the immune systerm reconize the cancer and the immune system is continuing to do its job).  There are many wonderful folks here that can comment better than I,  I just wanted to know we are here for you.  Praying for you and your family this Christmas Season,  Sharmon

                  • December 22, 2012 at 2:34 pm
                  sharmon
                  Participant

                    I am not an expert, only the wife of a survivor.  It sounds to me that the IPI might still be working,  It is possible for him to be a partial responder and a late resonder (meaning the ipi has helped the immune systerm reconize the cancer and the immune system is continuing to do its job).  There are many wonderful folks here that can comment better than I,  I just wanted to know we are here for you.  Praying for you and your family this Christmas Season,  Sharmon

                    • December 22, 2012 at 2:58 pm
                    Gene_S
                    Participant

                      Ask for a copy of your scans from November and then the Drs. can compare them.  Ipi may be still working because it seems unlikely that Z would work in 2 days.

                      • December 22, 2012 at 2:58 pm
                      Gene_S
                      Participant

                        Ask for a copy of your scans from November and then the Drs. can compare them.  Ipi may be still working because it seems unlikely that Z would work in 2 days.

                        • December 22, 2012 at 2:58 pm
                        Gene_S
                        Participant

                          Ask for a copy of your scans from November and then the Drs. can compare them.  Ipi may be still working because it seems unlikely that Z would work in 2 days.

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