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CT Scan results and BRAF +

Forums General Melanoma Community CT Scan results and BRAF +

  • Post
    dearfoam
    Participant

      Took dad for his CT scan (chest/ abs/ pelvis) this monring and got the results before lunch. I did not ask for a paper copy today; just plain forgot.

      Took dad for his CT scan (chest/ abs/ pelvis) this monring and got the results before lunch. I did not ask for a paper copy today; just plain forgot.

      Doc says unfortunately the chest tumors showed about 10% growth and the oters in the abdomen and pelvis showed even more. The spleen in particular is up to 3.3cm from 1.9cm in late August (last CT scan). The spleen met was discovered in late April so it has only grown – in fact the best we ever heard about any of the chest/abs/pelvis mets was "mild" and "stable" over the summer. The others include one on colon, one on left adrenal gland, others scattered about here and there.

      So for the good news: Since dad has been on Temodar since early May of this year, the doctor said it is time to move on to Zelboraf as his BRAF results had FINALLY come back conclusive, and positive for the mutation. The test was for one of his moles removedin October. However we still do not know if there is going to be a response because it appears he has had more than one primary melanoma, and they might be different from one another. There are a lot of variables! Testing his brain, lung and spleen mets was deemed too risky, by the way, so we are banking on the BRAF gene form this mole matching the other mets.

      Of course the next MRI isn't until December, so will have to wait on that, and by then hopefully we will see some shrinkage upstairs. 

      And frankly, this was a long-wait-but-way-too-quick-consult today. I even brought a typed list of questions and a letter to the doctor's office before the CT scan (3 hours before we saw Dr.) so he could go over some more sensitive issues with dad, man to man, but it appeared that he had not read it or just plain ignored my request. I saw it in his hands, but it looked to tidy to have been read. I am telling myself there were more pertinent issues distracting him today.

      I am still having trouble having to remind dad he is not mentally or physically in shape to do some things he woudl like to do, such as hop on a plane across the country or go back to working out of town living in a hotel without any help. I know it sounds bad to have to discourage him, but he is just too oblivious to his wellbeing/safety and symptoms and the level of care he needs and receives. I really needed the doctor to help, but maybe he will at the next follow up in three weeks? If not I might try to schedule with the Supportive Care clinic, but hearing things from the more authorative Oncologist is probably most likely to be effective or sink in.

      We applied for assitance with the Zelboraf, and either way should be getting it by the end of the week. I hope he will be approved – all these drugs are so expensive. I am also curious how severe the side effects will be as he had very few side effects from Temodar – just some fatigue and diarrhea. He will be goign to stay with my sister for a week and a half starting next Tuesday, and I hope we have side effects figured out before that!

      Thanks for your input,

      DF

    Viewing 5 reply threads
    • Replies
        deardad
        Participant

          Hi DF,

          Nothing easy about this disease but Zelboraf just might help with your dads tumor burden at the moment. My dad is due for his 2 monthly scan on this drug and has had mild side effects. Sore joints is really the main one, but this comes and goes and moves from one joint to another. Sun sensitivity is extreme, you cannot be in the sun even on overcast days without sunscreen 30plus. My understanding is that the lower the tumor burden the less the side effects. 

          Take care and hope he responds to Zelboraf

          Nahmi from Melbourne

            dearfoam
            Participant

              Thanks, he has over 20 total, so I suppose that is a high tumor burden. I showe dhim the Zelboraf literature on their website, and he seems ready to give it a shot!

              deardad
              Participant

                Hi again I think it's worth trying to lower his burden and if he responds, research other treatments.  My dad is in the stage of no cancer on scan (until the next one), so I dont know whats next, but I'm hoping he will last for awhile on Zelboraf until antiPD1 is up and running here. There are a few doing well on this here. Charlie on this board talks about trying all you can until you find something that works and I tend to agree, although I say this not being the patient. It's a rough road really I feel for you.

                Take care and let us know how he goes with it..and keep researching.

                Nahmi from Melbourne

                dearfoam
                Participant

                  I will have him stocked up on sunscreen, though he is already telling me how he will get around needing to use it!!??!! That is the hard part with dad – he is not actively participating in his care in the way that others on this board do. He doesn't research or anything, or really listen. He just does whatever the doctor suggests medicine-wise, but ignores most other advice. It's a point of contention that I have had to really struggle with. We have competent doctors, but I feel like dad does himself a disservice by not studying up on anything and leaving it to others. Maybe that is a bad sign. It is hard to say how the brain tumors affect motivation, though, and how that correlates to his survival.

                  I wish you and your dad well!

                  thanks,

                  DF

                  dearfoam
                  Participant

                    I will have him stocked up on sunscreen, though he is already telling me how he will get around needing to use it!!??!! That is the hard part with dad – he is not actively participating in his care in the way that others on this board do. He doesn't research or anything, or really listen. He just does whatever the doctor suggests medicine-wise, but ignores most other advice. It's a point of contention that I have had to really struggle with. We have competent doctors, but I feel like dad does himself a disservice by not studying up on anything and leaving it to others. Maybe that is a bad sign. It is hard to say how the brain tumors affect motivation, though, and how that correlates to his survival.

                    I wish you and your dad well!

                    thanks,

                    DF

                    dearfoam
                    Participant

                      I will have him stocked up on sunscreen, though he is already telling me how he will get around needing to use it!!??!! That is the hard part with dad – he is not actively participating in his care in the way that others on this board do. He doesn't research or anything, or really listen. He just does whatever the doctor suggests medicine-wise, but ignores most other advice. It's a point of contention that I have had to really struggle with. We have competent doctors, but I feel like dad does himself a disservice by not studying up on anything and leaving it to others. Maybe that is a bad sign. It is hard to say how the brain tumors affect motivation, though, and how that correlates to his survival.

                      I wish you and your dad well!

                      thanks,

                      DF

                      deardad
                      Participant

                        Hi again I think it's worth trying to lower his burden and if he responds, research other treatments.  My dad is in the stage of no cancer on scan (until the next one), so I dont know whats next, but I'm hoping he will last for awhile on Zelboraf until antiPD1 is up and running here. There are a few doing well on this here. Charlie on this board talks about trying all you can until you find something that works and I tend to agree, although I say this not being the patient. It's a rough road really I feel for you.

                        Take care and let us know how he goes with it..and keep researching.

                        Nahmi from Melbourne

                        deardad
                        Participant

                          Hi again I think it's worth trying to lower his burden and if he responds, research other treatments.  My dad is in the stage of no cancer on scan (until the next one), so I dont know whats next, but I'm hoping he will last for awhile on Zelboraf until antiPD1 is up and running here. There are a few doing well on this here. Charlie on this board talks about trying all you can until you find something that works and I tend to agree, although I say this not being the patient. It's a rough road really I feel for you.

                          Take care and let us know how he goes with it..and keep researching.

                          Nahmi from Melbourne

                          dearfoam
                          Participant

                            Thanks, he has over 20 total, so I suppose that is a high tumor burden. I showe dhim the Zelboraf literature on their website, and he seems ready to give it a shot!

                            dearfoam
                            Participant

                              Thanks, he has over 20 total, so I suppose that is a high tumor burden. I showe dhim the Zelboraf literature on their website, and he seems ready to give it a shot!

                            deardad
                            Participant

                              Hi DF,

                              Nothing easy about this disease but Zelboraf just might help with your dads tumor burden at the moment. My dad is due for his 2 monthly scan on this drug and has had mild side effects. Sore joints is really the main one, but this comes and goes and moves from one joint to another. Sun sensitivity is extreme, you cannot be in the sun even on overcast days without sunscreen 30plus. My understanding is that the lower the tumor burden the less the side effects. 

                              Take care and hope he responds to Zelboraf

                              Nahmi from Melbourne

                              deardad
                              Participant

                                Hi DF,

                                Nothing easy about this disease but Zelboraf just might help with your dads tumor burden at the moment. My dad is due for his 2 monthly scan on this drug and has had mild side effects. Sore joints is really the main one, but this comes and goes and moves from one joint to another. Sun sensitivity is extreme, you cannot be in the sun even on overcast days without sunscreen 30plus. My understanding is that the lower the tumor burden the less the side effects. 

                                Take care and hope he responds to Zelboraf

                                Nahmi from Melbourne

                                dearfoam
                                Participant

                                  Just heard from GeneTech, and thankfully they will have the medicine delivered this Friday.

                                  I really hope we will see some results as quickly as some of you have!!!

                                  -DF

                                  dearfoam
                                  Participant

                                    Just heard from GeneTech, and thankfully they will have the medicine delivered this Friday.

                                    I really hope we will see some results as quickly as some of you have!!!

                                    -DF

                                    dearfoam
                                    Participant

                                      Just heard from GeneTech, and thankfully they will have the medicine delivered this Friday.

                                      I really hope we will see some results as quickly as some of you have!!!

                                      -DF

                                  Viewing 5 reply threads
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