Nervous for Wednesday’s appointment with oncologist

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  • Post
    • December 26, 2016 at 8:10 pm
    Shaneswife
    Participant
      With hubby’s miliary spread of melanoma in both lungs and the brain, and multiple tumors in the liver, I’m very worried that there is no data out there to support a braf mek combo for this type of metastases. From my understanding, a miliary spread is extremely rare and having it in 3 organ sites has not been documented that could be found.

      Miliary type spread has an exceedingly poor prognosis which worries me the most.

      Hubby is showing more and more symptoms since radiation stopped. Jumbled words, anger, tremors when trying to do anything that requires fine motor skills, cramping all over his body randomly.

      We see the oncologist Wednesday and I have my list of questions ready.

    Viewing 14 reply threads
    • Replies
        • December 27, 2016 at 2:50 pm
        Hukill
        Participant

          I am so sorry to hear this, will pray for both of you.

          • December 27, 2016 at 2:50 pm
          Hukill
          Participant

            I am so sorry to hear this, will pray for both of you.

            • December 27, 2016 at 2:50 pm
            Hukill
            Participant

              I am so sorry to hear this, will pray for both of you.

              • December 27, 2016 at 3:41 pm
              Mamapegela
              Participant

                I am so sorry about your husbands situation, that both of you are going through this.  I can only offer my concern and sincere wish that he will find a great response to some treatment that they can offer. Please keep us informed.

                Best-Peggy

                • December 27, 2016 at 3:41 pm
                Mamapegela
                Participant

                  I am so sorry about your husbands situation, that both of you are going through this.  I can only offer my concern and sincere wish that he will find a great response to some treatment that they can offer. Please keep us informed.

                  Best-Peggy

                  • December 27, 2016 at 3:41 pm
                  Mamapegela
                  Participant

                    I am so sorry about your husbands situation, that both of you are going through this.  I can only offer my concern and sincere wish that he will find a great response to some treatment that they can offer. Please keep us informed.

                    Best-Peggy

                    • December 27, 2016 at 4:45 pm
                    Patrisa
                    Participant

                      Dear Shaneswife,

                      your treatment is just around the corner, hang in there!

                      I have read a little about miliary lesions, sounds scary cause of the rapid spread, but maybe systemic treatment will ofer great results, cause it has to tackle small lesions and can disolve them faster?

                      I sincerely hope your hubby will be ok, my prayers are with you!

                      Take care!

                      Patrisa

                      • December 27, 2016 at 4:45 pm
                      Patrisa
                      Participant

                        Dear Shaneswife,

                        your treatment is just around the corner, hang in there!

                        I have read a little about miliary lesions, sounds scary cause of the rapid spread, but maybe systemic treatment will ofer great results, cause it has to tackle small lesions and can disolve them faster?

                        I sincerely hope your hubby will be ok, my prayers are with you!

                        Take care!

                        Patrisa

                        • December 27, 2016 at 4:45 pm
                        Patrisa
                        Participant

                          Dear Shaneswife,

                          your treatment is just around the corner, hang in there!

                          I have read a little about miliary lesions, sounds scary cause of the rapid spread, but maybe systemic treatment will ofer great results, cause it has to tackle small lesions and can disolve them faster?

                          I sincerely hope your hubby will be ok, my prayers are with you!

                          Take care!

                          Patrisa

                          • December 27, 2016 at 6:36 pm
                          debwray
                          Participant

                            Hi Shaneswife,

                            Glad you had some supportive replies. Sorry to hear thing are getting more difficult in the radiation washout period and that Shane's symptoms are worse, but this may be due to trauma /swelling post radiation treatment  and could be temporary ?

                            It must be difficult to stay positive with miliary disease and multiple sites but the BRAF/MEK combo can work really quickly. This must be a very scary time for you both but the docs are still looking at treatment and there is still reason to hope that Shane will respond to it.

                            I sincerely hope you get some encouraging news when you both see the oncologist. There are a number of people on the boards that have defied the most dismal of prognoses….I am hopeful that this may be the case for many more of us with the newer drugs and combo treatments.

                            Wishing you both all the very best,

                            Have an internet hug…

                            Deb

                            • December 27, 2016 at 6:36 pm
                            debwray
                            Participant

                              Hi Shaneswife,

                              Glad you had some supportive replies. Sorry to hear thing are getting more difficult in the radiation washout period and that Shane's symptoms are worse, but this may be due to trauma /swelling post radiation treatment  and could be temporary ?

                              It must be difficult to stay positive with miliary disease and multiple sites but the BRAF/MEK combo can work really quickly. This must be a very scary time for you both but the docs are still looking at treatment and there is still reason to hope that Shane will respond to it.

                              I sincerely hope you get some encouraging news when you both see the oncologist. There are a number of people on the boards that have defied the most dismal of prognoses….I am hopeful that this may be the case for many more of us with the newer drugs and combo treatments.

                              Wishing you both all the very best,

                              Have an internet hug…

                              Deb

                              • December 27, 2016 at 6:36 pm
                              debwray
                              Participant

                                Hi Shaneswife,

                                Glad you had some supportive replies. Sorry to hear thing are getting more difficult in the radiation washout period and that Shane's symptoms are worse, but this may be due to trauma /swelling post radiation treatment  and could be temporary ?

                                It must be difficult to stay positive with miliary disease and multiple sites but the BRAF/MEK combo can work really quickly. This must be a very scary time for you both but the docs are still looking at treatment and there is still reason to hope that Shane will respond to it.

                                I sincerely hope you get some encouraging news when you both see the oncologist. There are a number of people on the boards that have defied the most dismal of prognoses….I am hopeful that this may be the case for many more of us with the newer drugs and combo treatments.

                                Wishing you both all the very best,

                                Have an internet hug…

                                Deb

                                • December 29, 2016 at 1:33 am
                                casagrayson
                                Participant

                                  How did it go today?

                                  • December 29, 2016 at 1:33 am
                                  casagrayson
                                  Participant

                                    How did it go today?

                                    • December 29, 2016 at 1:33 am
                                    casagrayson
                                    Participant

                                      How did it go today?

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