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Scans on Wed, Mixed good and bad news!
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Scans on Wed, Mixed good and bad news!

› Forums › General Melanoma Community › Scans on Wed, Mixed good and bad news!

  • Post
    • November 6, 2011 at 11:47 pm
    Jan in OC
    Participant

       

      Well, we have had a wild ride here in Houston.  Just to update, in late August, Dirk had new brain mets & they were growing very fast (not clustered , but all over the brain).   First, surgery to remove the largest tumor, followed by 3 weeks of healing.  Early September was Bio-Chemo round #1, then 10 days of WBR immediately after chemo. After 5 days of recovery, another round of Bio-Chemo in mid-October.  After two weeks of recovery, the "dreaded" CT and MRI on Nov 1st.  

       

      Well, we have had a wild ride here in Houston.  Just to update, in late August, Dirk had new brain mets & they were growing very fast (not clustered , but all over the brain).   First, surgery to remove the largest tumor, followed by 3 weeks of healing.  Early September was Bio-Chemo round #1, then 10 days of WBR immediately after chemo. After 5 days of recovery, another round of Bio-Chemo in mid-October.  After two weeks of recovery, the "dreaded" CT and MRI on Nov 1st.  

      We met with Dr. Papa on Wednesday to review. Good news is that "most" of the tumors in his liver and lungs have not grown any larger since the start of bio-chemo.  BAD news is that none of the tumors are shrinking. The disappointing news is the MRI shows that he has several brain mets that have gotten larger.  We are waiting on MD radiation team to (hopefully) schedule Gamma knife on those.  

      Dirk has some memory loss (almost like early alzheimers), reduced hearing in both ears and reduced vision in left eye.  We are hoping that some of his side effect will get better with time.  It is difficult to know what is chemo brain, craniotomy or from WBR.  

      Papa has told us no more Bio-Chemo right now. He feels it is not worth it as there was no benefit (shrinkage).  He proposed starting him on Abraxene(?).  He also told us that the TIL's are no longer an option.  What to do? Don't know what (if anything) is left to us.  Anyone with suggestions? Words of Wisdom?

      We have tried Interferon, done trials with BRAF, IPI and E-7080, and now Bio-Chemo (mixed 5 drugs including IL-2 and temodar).  Have had SRS, WBR and Craniotomy for Brain mets.  His tumor burden just keeps getting heavier.  We received the "talk" with the NP regarding quality of life VS quantity.  Dirk was surprised that it came up.  He did not think we are at that point.   

      We are going to de-stress and just live this week!  Maybe take a drive to Galveston to see the Gulf (Dirk has not been there yet). What is there to do around Houston that will not use up a lot of his energy? Suggestions for fun are welcome.

      Jan, wife to Dirk stage IV

       

       

    Viewing 20 reply threads
    • Replies
        • November 7, 2011 at 2:04 am
        SStamps
        Participant

          Hi Jan

          Wish I had words of wisdom I do have prayers for you and Dirk.  We are eight months into this diagnoses and I am still a little numb but reading all I can.  I am glad I found this site. Hope you enjoy your week.  Bless you both.

          My husband also sees Dr Papa.  There is the Houston Museum and we went to the movies pretty close to where we stay.  You can borrow a wheelchair for the museum and if you go the movies they have valet parking. We don't venture out to much our stays have been short except for WBR we visited with friends that live close. 

          Samantha

          • November 7, 2011 at 2:04 am
          SStamps
          Participant

            Hi Jan

            Wish I had words of wisdom I do have prayers for you and Dirk.  We are eight months into this diagnoses and I am still a little numb but reading all I can.  I am glad I found this site. Hope you enjoy your week.  Bless you both.

            My husband also sees Dr Papa.  There is the Houston Museum and we went to the movies pretty close to where we stay.  You can borrow a wheelchair for the museum and if you go the movies they have valet parking. We don't venture out to much our stays have been short except for WBR we visited with friends that live close. 

            Samantha

            • November 7, 2011 at 2:04 am
            SStamps
            Participant

              Hi Jan

              Wish I had words of wisdom I do have prayers for you and Dirk.  We are eight months into this diagnoses and I am still a little numb but reading all I can.  I am glad I found this site. Hope you enjoy your week.  Bless you both.

              My husband also sees Dr Papa.  There is the Houston Museum and we went to the movies pretty close to where we stay.  You can borrow a wheelchair for the museum and if you go the movies they have valet parking. We don't venture out to much our stays have been short except for WBR we visited with friends that live close. 

              Samantha

              • November 7, 2011 at 2:37 am
              dearfoam
              Participant

                There are some great art museums (that aren't very big/ exhausting) in a little neighborhood in Houston I have visted – the Cy Twombly gallery being my favorite. Also the Rothko Chapel (non-denominational prayer/ meditation space open to the public). To me (an artist) it's very contemplative, but may not be interesting to everyone. But it is low-key.

                http://www.menil.org/

                http://www.rothkochapel.org/

                -DF

                • November 7, 2011 at 2:37 am
                dearfoam
                Participant

                  There are some great art museums (that aren't very big/ exhausting) in a little neighborhood in Houston I have visted – the Cy Twombly gallery being my favorite. Also the Rothko Chapel (non-denominational prayer/ meditation space open to the public). To me (an artist) it's very contemplative, but may not be interesting to everyone. But it is low-key.

                  http://www.menil.org/

                  http://www.rothkochapel.org/

                  -DF

                  • November 7, 2011 at 2:37 am
                  dearfoam
                  Participant

                    There are some great art museums (that aren't very big/ exhausting) in a little neighborhood in Houston I have visted – the Cy Twombly gallery being my favorite. Also the Rothko Chapel (non-denominational prayer/ meditation space open to the public). To me (an artist) it's very contemplative, but may not be interesting to everyone. But it is low-key.

                    http://www.menil.org/

                    http://www.rothkochapel.org/

                    -DF

                    • November 7, 2011 at 4:58 am
                    robyn44
                    Participant

                      Jan- Sorry about the  mixed review!  Earlier you asked about my team at MDAnderson. I see Wen-JenHwu, Neurosurgeon is Weinberg, (was Cahill but he recently moved to Boston), RAD-Onc is MacAleer. I absolutly love the entire team. All are highly responsive and have been fantasitic in ER situations with bleeding brain tumors. I will be in Houston this week for scans and appts. I stay close to the hospital and only "fun" i have had was going to Galveston.  I hve friends in Houston so respond with some of his interests and I will try to gt some ideas for you!  Dr. Kim is running  trial for those who hve failed Braf inhibitors. Not sure of any of the exclusions, know brain mets are allowed with certain parameters. Not sure if you looked into anything like that. I just communiated with Dr. Hwu about it but since I have not failed an inhibitor I do not qualify. I begin the inhibitor soon if MRI is stable.     Hearing lose can be related to the anitbiotics given after the crani.! I have struggled with this and an audiologist communicted with Dr. Cahill and they believe that this is what happened to my hearing. One of my tumors was in the right occipital lobe, lost vision in left eye but it has fully returned over the past year.Able to drive and vision is back to 20/20. Maybe just time and decrease in swelling. Brain edema can take a long time to resolve as I'm sure you are well versed in by now! Take Care and if you are around MD this week let me know and maybe we can grab lunch! Take Care- Robyn

                      • November 7, 2011 at 4:58 am
                      robyn44
                      Participant

                        Jan- Sorry about the  mixed review!  Earlier you asked about my team at MDAnderson. I see Wen-JenHwu, Neurosurgeon is Weinberg, (was Cahill but he recently moved to Boston), RAD-Onc is MacAleer. I absolutly love the entire team. All are highly responsive and have been fantasitic in ER situations with bleeding brain tumors. I will be in Houston this week for scans and appts. I stay close to the hospital and only "fun" i have had was going to Galveston.  I hve friends in Houston so respond with some of his interests and I will try to gt some ideas for you!  Dr. Kim is running  trial for those who hve failed Braf inhibitors. Not sure of any of the exclusions, know brain mets are allowed with certain parameters. Not sure if you looked into anything like that. I just communiated with Dr. Hwu about it but since I have not failed an inhibitor I do not qualify. I begin the inhibitor soon if MRI is stable.     Hearing lose can be related to the anitbiotics given after the crani.! I have struggled with this and an audiologist communicted with Dr. Cahill and they believe that this is what happened to my hearing. One of my tumors was in the right occipital lobe, lost vision in left eye but it has fully returned over the past year.Able to drive and vision is back to 20/20. Maybe just time and decrease in swelling. Brain edema can take a long time to resolve as I'm sure you are well versed in by now! Take Care and if you are around MD this week let me know and maybe we can grab lunch! Take Care- Robyn

                        • November 7, 2011 at 4:58 am
                        robyn44
                        Participant

                          Jan- Sorry about the  mixed review!  Earlier you asked about my team at MDAnderson. I see Wen-JenHwu, Neurosurgeon is Weinberg, (was Cahill but he recently moved to Boston), RAD-Onc is MacAleer. I absolutly love the entire team. All are highly responsive and have been fantasitic in ER situations with bleeding brain tumors. I will be in Houston this week for scans and appts. I stay close to the hospital and only "fun" i have had was going to Galveston.  I hve friends in Houston so respond with some of his interests and I will try to gt some ideas for you!  Dr. Kim is running  trial for those who hve failed Braf inhibitors. Not sure of any of the exclusions, know brain mets are allowed with certain parameters. Not sure if you looked into anything like that. I just communiated with Dr. Hwu about it but since I have not failed an inhibitor I do not qualify. I begin the inhibitor soon if MRI is stable.     Hearing lose can be related to the anitbiotics given after the crani.! I have struggled with this and an audiologist communicted with Dr. Cahill and they believe that this is what happened to my hearing. One of my tumors was in the right occipital lobe, lost vision in left eye but it has fully returned over the past year.Able to drive and vision is back to 20/20. Maybe just time and decrease in swelling. Brain edema can take a long time to resolve as I'm sure you are well versed in by now! Take Care and if you are around MD this week let me know and maybe we can grab lunch! Take Care- Robyn

                          • November 7, 2011 at 9:24 am
                          FormerCaregiver
                          Participant

                            Jan, I am saddened to read of Dirk's situation. Hopefully Gamma Knife will be effective in treating the brain mets.

                            I don't have any specific ideas regarding additional treatments, however Abraxane or other chemo might be beneficial. I also don't know if there are any clinical trials that Dirk would be eligible for, but maybe there could be.

                            Take care

                            Frank from Australia

                            • November 7, 2011 at 9:24 am
                            FormerCaregiver
                            Participant

                              Jan, I am saddened to read of Dirk's situation. Hopefully Gamma Knife will be effective in treating the brain mets.

                              I don't have any specific ideas regarding additional treatments, however Abraxane or other chemo might be beneficial. I also don't know if there are any clinical trials that Dirk would be eligible for, but maybe there could be.

                              Take care

                              Frank from Australia

                              • November 7, 2011 at 9:24 am
                              FormerCaregiver
                              Participant

                                Jan, I am saddened to read of Dirk's situation. Hopefully Gamma Knife will be effective in treating the brain mets.

                                I don't have any specific ideas regarding additional treatments, however Abraxane or other chemo might be beneficial. I also don't know if there are any clinical trials that Dirk would be eligible for, but maybe there could be.

                                Take care

                                Frank from Australia

                                • November 7, 2011 at 1:33 pm
                                Gene_S
                                Participant

                                  Hello Jan,

                                  So sorry to hear about the struggle you and Dirk have been going through.  I don't have any suggestions but will keep you and Dirk in my prayers.  I have never been to Houston so I also cannot give any information on that as well.

                                  I hope you enjoy your week and have a good time.  Sometimes a little time off can help greatly and minimize the stress.

                                  Judy and Gene

                                  • November 7, 2011 at 1:33 pm
                                  Gene_S
                                  Participant

                                    Hello Jan,

                                    So sorry to hear about the struggle you and Dirk have been going through.  I don't have any suggestions but will keep you and Dirk in my prayers.  I have never been to Houston so I also cannot give any information on that as well.

                                    I hope you enjoy your week and have a good time.  Sometimes a little time off can help greatly and minimize the stress.

                                    Judy and Gene

                                    • November 7, 2011 at 1:33 pm
                                    Gene_S
                                    Participant

                                      Hello Jan,

                                      So sorry to hear about the struggle you and Dirk have been going through.  I don't have any suggestions but will keep you and Dirk in my prayers.  I have never been to Houston so I also cannot give any information on that as well.

                                      I hope you enjoy your week and have a good time.  Sometimes a little time off can help greatly and minimize the stress.

                                      Judy and Gene

                                      • November 7, 2011 at 11:03 pm
                                      triciad
                                      Participant

                                        Jan

                                        I'm so sorry to hear about these setbacks.   My prayers are with you…good luck with your appointments.

                                        Houston is a great place; I used to travel there on business quite frequently.  Check out NASA.  I'm sure they have wheelchairs available.

                                        Keep the fight going!

                                        Tricia

                                        • November 7, 2011 at 11:03 pm
                                        triciad
                                        Participant

                                          Jan

                                          I'm so sorry to hear about these setbacks.   My prayers are with you…good luck with your appointments.

                                          Houston is a great place; I used to travel there on business quite frequently.  Check out NASA.  I'm sure they have wheelchairs available.

                                          Keep the fight going!

                                          Tricia

                                          • November 7, 2011 at 11:03 pm
                                          triciad
                                          Participant

                                            Jan

                                            I'm so sorry to hear about these setbacks.   My prayers are with you…good luck with your appointments.

                                            Houston is a great place; I used to travel there on business quite frequently.  Check out NASA.  I'm sure they have wheelchairs available.

                                            Keep the fight going!

                                            Tricia

                                            • November 8, 2011 at 12:10 pm
                                            lhaley
                                            Participant

                                              Jan,

                                              Emotionally it has been so difficult for both of you as keep getting roadblocks.  I wish I had some suggestions as you wait for the next step at MDA.  I do agree for both of you to de-stress and just live this week!   Go for a ride, take a picnic and sit and stare at the Gulf.  One of the things I love to do is to just be mesmorized by the ocean.  

                                              My husband is talking about taking a train ride this weekend in the mountains.  Sometimes being closer to nature can soothe the thoughts.

                                              Linda

                                              • November 8, 2011 at 12:10 pm
                                              lhaley
                                              Participant

                                                Jan,

                                                Emotionally it has been so difficult for both of you as keep getting roadblocks.  I wish I had some suggestions as you wait for the next step at MDA.  I do agree for both of you to de-stress and just live this week!   Go for a ride, take a picnic and sit and stare at the Gulf.  One of the things I love to do is to just be mesmorized by the ocean.  

                                                My husband is talking about taking a train ride this weekend in the mountains.  Sometimes being closer to nature can soothe the thoughts.

                                                Linda

                                                • November 8, 2011 at 12:10 pm
                                                lhaley
                                                Participant

                                                  Jan,

                                                  Emotionally it has been so difficult for both of you as keep getting roadblocks.  I wish I had some suggestions as you wait for the next step at MDA.  I do agree for both of you to de-stress and just live this week!   Go for a ride, take a picnic and sit and stare at the Gulf.  One of the things I love to do is to just be mesmorized by the ocean.  

                                                  My husband is talking about taking a train ride this weekend in the mountains.  Sometimes being closer to nature can soothe the thoughts.

                                                  Linda

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