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some advice please?
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some advice please?

› Forums › General Melanoma Community › some advice please?

  • Post
    • September 9, 2011 at 1:43 am
    deardad
    Participant

      Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

      Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

      Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

      Nahmi in Melbourne

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        • September 10, 2011 at 12:05 pm
        mygirlmaddy
        Participant

          I'm sorry you are having to live like this.  My family is experiencing the same thing and it is the hardest thing we have ever had to do.  My advice to you is that you are your father's advocate.  The medical professionals are amazing, but you are one of many.  If you need something or want something done, tell them.  Our medical team has granted our every wish, even if it was not what they had planned.  The only footnote I will add to that is that if the only thing that you will know by doing an MRI sooner is that there is nothing else you can do, it might be worth waiting and giving yourselves the time to hope and come to terms with the outcome.  If you can find your way clear to do it, try to make the most of this time.  What you are dealing with is sad and overwhelming, but every minute you have with your dad is just that much more special.  Celebrate the time you have, there's always time to be sad but now is the time for making happy memories.

          Best wishes to you!

          • September 10, 2011 at 12:05 pm
          mygirlmaddy
          Participant

            I'm sorry you are having to live like this.  My family is experiencing the same thing and it is the hardest thing we have ever had to do.  My advice to you is that you are your father's advocate.  The medical professionals are amazing, but you are one of many.  If you need something or want something done, tell them.  Our medical team has granted our every wish, even if it was not what they had planned.  The only footnote I will add to that is that if the only thing that you will know by doing an MRI sooner is that there is nothing else you can do, it might be worth waiting and giving yourselves the time to hope and come to terms with the outcome.  If you can find your way clear to do it, try to make the most of this time.  What you are dealing with is sad and overwhelming, but every minute you have with your dad is just that much more special.  Celebrate the time you have, there's always time to be sad but now is the time for making happy memories.

            Best wishes to you!

              • September 10, 2011 at 12:49 pm
              deardad
              Participant

                Hello and thank you for your advice. Im sorry you and your family are going through this too. I find it very frustrating just sitting and waiting between appointments with no active therapy knowing that this disease is aggressive and spreading and there's absolutely nothing any of us can do. I know that there is no cure for this disease at this stage and we are really making the most of our precious time with dad while he is still well. I just can't help always wondering whether we could be a bit more proactive with questions about treatments? Is braf a last resort? The oncologist said he is lucky that he doesn't have a lot of disease at this point..so I"m wondering why we arent trying IPI or something more durable while he is well? I just always thought they pulled braf out last? Maybe his condition is much worse than they are letting us know. 

                Thanks for your kind words and I hope you too can enjoy your time with your father and find strength to cope.

                • September 10, 2011 at 12:49 pm
                deardad
                Participant

                  Hello and thank you for your advice. Im sorry you and your family are going through this too. I find it very frustrating just sitting and waiting between appointments with no active therapy knowing that this disease is aggressive and spreading and there's absolutely nothing any of us can do. I know that there is no cure for this disease at this stage and we are really making the most of our precious time with dad while he is still well. I just can't help always wondering whether we could be a bit more proactive with questions about treatments? Is braf a last resort? The oncologist said he is lucky that he doesn't have a lot of disease at this point..so I"m wondering why we arent trying IPI or something more durable while he is well? I just always thought they pulled braf out last? Maybe his condition is much worse than they are letting us know. 

                  Thanks for your kind words and I hope you too can enjoy your time with your father and find strength to cope.

                  • September 11, 2011 at 1:29 am
                  JerryfromFauq
                  Participant

                    I would not look at BRAF treatment as the last resort.  if one is BRAF positive for the mutatiion the drug is approved for and  one responds, even partially, Ones tumor load should be reduced.  It is unknown how long the maximum response time can be.  If I were BRAF positive I would look at the BRAF treatment as one of the early treatments to try.  I started a targeted treatment for c-kit as my second drug treatment over 2 1/2 years ago and while not really much regresssion, I am still living and not looking to leave here soon.

                    • September 11, 2011 at 1:29 am
                    JerryfromFauq
                    Participant

                      I would not look at BRAF treatment as the last resort.  if one is BRAF positive for the mutatiion the drug is approved for and  one responds, even partially, Ones tumor load should be reduced.  It is unknown how long the maximum response time can be.  If I were BRAF positive I would look at the BRAF treatment as one of the early treatments to try.  I started a targeted treatment for c-kit as my second drug treatment over 2 1/2 years ago and while not really much regresssion, I am still living and not looking to leave here soon.

                      • October 2, 2011 at 3:38 am
                      deardad
                      Participant

                        That's really encouraging to hear and I'm so happy that your disease is stable! Dad has now been on Vemurafenib for 10 days and the subq's (2 small ones are regressing) – I hope this means that the internal ones are too. He has joint pain but otherwise no major side effects as yet.  MRI scans coming up in a few weeks and hoping that any rouge cells are being destroyed by the drug.

                        What a wonderful supportive group you all are on this board, thank you for sharing your personal experiences. 

                        Hope you stay here for many many years to come.

                        Nahmi in Melbourne.

                        • October 2, 2011 at 3:38 am
                        deardad
                        Participant

                          That's really encouraging to hear and I'm so happy that your disease is stable! Dad has now been on Vemurafenib for 10 days and the subq's (2 small ones are regressing) – I hope this means that the internal ones are too. He has joint pain but otherwise no major side effects as yet.  MRI scans coming up in a few weeks and hoping that any rouge cells are being destroyed by the drug.

                          What a wonderful supportive group you all are on this board, thank you for sharing your personal experiences. 

                          Hope you stay here for many many years to come.

                          Nahmi in Melbourne.

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