Concerns About my Dad
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Concerns About my Dad

› Forums › General Melanoma Community › Concerns About my Dad

  • Post
    • October 20, 2016 at 6:00 pm
    cookiechick
    Participant

      My elderly father was diagnosed with Stage IIB melanoma last October which was treated with a wide excision and removal of 4 lymph nodes around his arm/underarm.  We were told by the surgeon that no trace of the cancer was found in any node or the margins and we were thrilled and no further treatment was ordered.

      Unfortunately, fast forward a year later and it appears that he now has several mets to his lung (confirmed via biopsy last week) and, I suspect due to very recent vision changes, mets to his brain.  He is having an MRI of his brain today.  We'll be meeting with his oncologist for the first time on Monday. 

      First, I can't believe how quickly this is happening.  Secondly, he is being treated at Memorial Sloan Cancer Center in NYC.  We loved his surgeon, but I'm a little disappointed that he was not assigned to Dr. Wolchok as, at least in my non-medical opinion, he seems to have a very advanced case.  We were told, however, that they wanted us to get the first available appointment, so I guess beggars can't be choosers. 

      I'm reaching out partly for some moral support and partly because so many of you have been down this road and know a lot more than I do. 1) What kinds of questions should be asking his onc?  2) what are the possible treatment options? 3) We don't know his BRAF or other gene status yet, but is there a chance that a treatment could buy us some time? 4) Do you think we should waste time getting a second opinion or just go with whatever treatment is recommended by MSKCC.

      Thanks

    Viewing 8 reply threads
    • Replies
        • October 21, 2016 at 5:27 am
        snow white
        Participant

          I don't have answers to all of your questions, but i personally think a second opinion is VERY important!!!!  My Dad had 3 diffrent opinions from 3 diffrent doctors.  Fortunatley they all put there heads together and came up with a plan. What makes you think he is very advanced? From what I know the treatment options will vary, especially if he is BRAF +.  Dont rush into anything, take some time to make sure you know all of your options.  

          I am sure some of the more experienced ones will pop on here and give you some pointers.

          Hang in there.

          • October 21, 2016 at 5:27 am
          snow white
          Participant

            I don't have answers to all of your questions, but i personally think a second opinion is VERY important!!!!  My Dad had 3 diffrent opinions from 3 diffrent doctors.  Fortunatley they all put there heads together and came up with a plan. What makes you think he is very advanced? From what I know the treatment options will vary, especially if he is BRAF +.  Dont rush into anything, take some time to make sure you know all of your options.  

            I am sure some of the more experienced ones will pop on here and give you some pointers.

            Hang in there.

            • October 21, 2016 at 5:27 am
            snow white
            Participant

              I don't have answers to all of your questions, but i personally think a second opinion is VERY important!!!!  My Dad had 3 diffrent opinions from 3 diffrent doctors.  Fortunatley they all put there heads together and came up with a plan. What makes you think he is very advanced? From what I know the treatment options will vary, especially if he is BRAF +.  Dont rush into anything, take some time to make sure you know all of your options.  

              I am sure some of the more experienced ones will pop on here and give you some pointers.

              Hang in there.

              • October 21, 2016 at 2:40 pm
              keepthefaith11
              Participant
                I am so sorry to hear this. Know that you are in a place with lots of support and many knowledgeable people who have experience with this. My father was diagnosed with 13 brain mets back in July. He had radiation and is now going through immunotherapy. It is so very difficult to see a loved one go through this. I feel being proactive is the best way for me to deal with it. And that is what you are doing as well, coming here.

                I am no expert but I will give you my input. First things first. They have to determine whether he has brain Mets or not. From my understanding those have to be dealt with first. If he has them gamma knife would be the way to go. Second thing is that you have to find out the braf status. This will determine treatment. If they feel he has very aggressive disease you might be good to start him on the braf Inhibitors to bring the tumor burden down. If they feel they have time however, immunotherapy would be the way to go. There has been great studies on immunotherapy following radiation and the results have been amazing!

                Thankfully there are treatments that work nowadays. So keep the faith that your dad will be a responder and get rid of this Beast!

                Let us know what the scan of the brain shows.

                Annie

                • October 21, 2016 at 2:40 pm
                keepthefaith11
                Participant
                  I am so sorry to hear this. Know that you are in a place with lots of support and many knowledgeable people who have experience with this. My father was diagnosed with 13 brain mets back in July. He had radiation and is now going through immunotherapy. It is so very difficult to see a loved one go through this. I feel being proactive is the best way for me to deal with it. And that is what you are doing as well, coming here.

                  I am no expert but I will give you my input. First things first. They have to determine whether he has brain Mets or not. From my understanding those have to be dealt with first. If he has them gamma knife would be the way to go. Second thing is that you have to find out the braf status. This will determine treatment. If they feel he has very aggressive disease you might be good to start him on the braf Inhibitors to bring the tumor burden down. If they feel they have time however, immunotherapy would be the way to go. There has been great studies on immunotherapy following radiation and the results have been amazing!

                  Thankfully there are treatments that work nowadays. So keep the faith that your dad will be a responder and get rid of this Beast!

                  Let us know what the scan of the brain shows.

                  Annie

                  • October 21, 2016 at 2:40 pm
                  keepthefaith11
                  Participant
                    I am so sorry to hear this. Know that you are in a place with lots of support and many knowledgeable people who have experience with this. My father was diagnosed with 13 brain mets back in July. He had radiation and is now going through immunotherapy. It is so very difficult to see a loved one go through this. I feel being proactive is the best way for me to deal with it. And that is what you are doing as well, coming here.

                    I am no expert but I will give you my input. First things first. They have to determine whether he has brain Mets or not. From my understanding those have to be dealt with first. If he has them gamma knife would be the way to go. Second thing is that you have to find out the braf status. This will determine treatment. If they feel he has very aggressive disease you might be good to start him on the braf Inhibitors to bring the tumor burden down. If they feel they have time however, immunotherapy would be the way to go. There has been great studies on immunotherapy following radiation and the results have been amazing!

                    Thankfully there are treatments that work nowadays. So keep the faith that your dad will be a responder and get rid of this Beast!

                    Let us know what the scan of the brain shows.

                    Annie

                    • October 21, 2016 at 2:47 pm
                    Gene_S
                    Participant

                      My husband started his melanoma journey with a IIIb and the SNB came back negative as well.  Unfortunately melanoma can travel through the blood as easily as through the lymph.

                      So even if it has spread that is not a death sentence.  My husband progressed to Stage IV and went on a clinical trial and he is now NED for over 4 years.  I won't say it was an easy road but everyone reacts to each medication differently and everyones melanoma acts differently.

                      I don't know how old your Dad is but my husband started his journey at 57 and if you would like to read more about his journey check out his profile.

                      Judy (loving wife of Gene Stage IV and now NED for over 4 years.)

                      • October 21, 2016 at 2:47 pm
                      Gene_S
                      Participant

                        My husband started his melanoma journey with a IIIb and the SNB came back negative as well.  Unfortunately melanoma can travel through the blood as easily as through the lymph.

                        So even if it has spread that is not a death sentence.  My husband progressed to Stage IV and went on a clinical trial and he is now NED for over 4 years.  I won't say it was an easy road but everyone reacts to each medication differently and everyones melanoma acts differently.

                        I don't know how old your Dad is but my husband started his journey at 57 and if you would like to read more about his journey check out his profile.

                        Judy (loving wife of Gene Stage IV and now NED for over 4 years.)

                        • October 21, 2016 at 2:47 pm
                        Gene_S
                        Participant

                          My husband started his melanoma journey with a IIIb and the SNB came back negative as well.  Unfortunately melanoma can travel through the blood as easily as through the lymph.

                          So even if it has spread that is not a death sentence.  My husband progressed to Stage IV and went on a clinical trial and he is now NED for over 4 years.  I won't say it was an easy road but everyone reacts to each medication differently and everyones melanoma acts differently.

                          I don't know how old your Dad is but my husband started his journey at 57 and if you would like to read more about his journey check out his profile.

                          Judy (loving wife of Gene Stage IV and now NED for over 4 years.)

                      Viewing 8 reply threads

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