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CLL and Melanoma
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CLL and Melanoma

› Forums › General Melanoma Community › CLL and Melanoma

  • Post
    • February 14, 2014 at 8:06 pm
    Bleeds
    Participant

      Hello all,

       

      First post…

       

      Looking for anyone or anything or anywhere with regards to a CLL patient (5.5 years) and recently diagnosed with Met Melanoma (liver, lungs spleen nodes). Already learned the acronyms for CLL now have to learn them for this. Still awaiting for BRAF mute and others. Waiting for an appointment at U of CO hospital melanoma group in Denver. Might be willing to go to UCLA. Anyone know of a good doc there? Clinical trials?

       

      Thank you very much!!!

       

      Gary

       

       

    Viewing 2 reply threads
    • Replies
        • February 14, 2014 at 8:21 pm
        JerryfromFauq
        Participant

          Gary, do you know if your CLL has the c-kit oncoprotein over expression or DNA mutation?  I know that Gleevec works tohelp controls ome types of CLL.  Though not FDA approved for melanoma, it Can be effective on those  of us that have the C-kit mutations, especially on exon 11.

           

           

            • February 15, 2014 at 6:04 am
            Bleeds
            Participant

              Hi Jerry,

              I do not know. I know I do not have Del 13q or Del 17p and have been on a wait and see for the last 5.5 years. I will update my profile to give you a better clue to me.

               

              Thanks,

              Gary

              • February 17, 2014 at 4:37 pm
              OzzieK
              Participant

                Hi Gary. Unfortunately I don't have any information to help you, however I can emphathize with your situation and would be interested in anything related to this topic. My dad also has CLL – stage 1 (diagnosed via routine blood work about 3 years ago, no active disease or symptoms) and now diagnosed with Melanoma stage 3C. Needless to say, the combination of the 2 cancers certainly adds an extra complication to the  mix. He's already been told that because of the CLL he won't qualify for any trials. We've just begun this process, so hoping to find the right specialists for parallel treatment/oversight of both cancers (my dad is in Southern California).

                If I have any specific information related to this I will post it.

                Thinking of you and hoping for the best.

                • February 17, 2014 at 4:37 pm
                OzzieK
                Participant

                  Hi Gary. Unfortunately I don't have any information to help you, however I can emphathize with your situation and would be interested in anything related to this topic. My dad also has CLL – stage 1 (diagnosed via routine blood work about 3 years ago, no active disease or symptoms) and now diagnosed with Melanoma stage 3C. Needless to say, the combination of the 2 cancers certainly adds an extra complication to the  mix. He's already been told that because of the CLL he won't qualify for any trials. We've just begun this process, so hoping to find the right specialists for parallel treatment/oversight of both cancers (my dad is in Southern California).

                  If I have any specific information related to this I will post it.

                  Thinking of you and hoping for the best.

                  • February 17, 2014 at 4:37 pm
                  OzzieK
                  Participant

                    Hi Gary. Unfortunately I don't have any information to help you, however I can emphathize with your situation and would be interested in anything related to this topic. My dad also has CLL – stage 1 (diagnosed via routine blood work about 3 years ago, no active disease or symptoms) and now diagnosed with Melanoma stage 3C. Needless to say, the combination of the 2 cancers certainly adds an extra complication to the  mix. He's already been told that because of the CLL he won't qualify for any trials. We've just begun this process, so hoping to find the right specialists for parallel treatment/oversight of both cancers (my dad is in Southern California).

                    If I have any specific information related to this I will post it.

                    Thinking of you and hoping for the best.

                    • February 19, 2014 at 1:22 am
                    Bleeds
                    Participant

                      Thank you for your response. Good luck with your dad. Has he had a head to toe PET/CT scan? Have they done a biopsy on his lymph nodes? The problem as you know with the CLL, is it is directly related to skin cancers as the body is lacking the fighting capabilities to attack the skin cancer. I have had two Basil's cut out and have had four MOHs for Squamous on my face. I thought the tumors would be from one of those but Mel! I was shocked as there have been no signs of it on me. It was nice to have a full scan as a base and determine how long it has been in my body. The bummer is when the radiologist reads the scan they are only looking in the area of concern as in my case lymph nodes and missed the spots on my liver.  Great! 

                      What treatment is your dad leaning to? 

                      Good luck with all,

                      Gary

                      • February 19, 2014 at 1:22 am
                      Bleeds
                      Participant

                        Thank you for your response. Good luck with your dad. Has he had a head to toe PET/CT scan? Have they done a biopsy on his lymph nodes? The problem as you know with the CLL, is it is directly related to skin cancers as the body is lacking the fighting capabilities to attack the skin cancer. I have had two Basil's cut out and have had four MOHs for Squamous on my face. I thought the tumors would be from one of those but Mel! I was shocked as there have been no signs of it on me. It was nice to have a full scan as a base and determine how long it has been in my body. The bummer is when the radiologist reads the scan they are only looking in the area of concern as in my case lymph nodes and missed the spots on my liver.  Great! 

                        What treatment is your dad leaning to? 

                        Good luck with all,

                        Gary

                        • February 19, 2014 at 1:22 am
                        Bleeds
                        Participant

                          Thank you for your response. Good luck with your dad. Has he had a head to toe PET/CT scan? Have they done a biopsy on his lymph nodes? The problem as you know with the CLL, is it is directly related to skin cancers as the body is lacking the fighting capabilities to attack the skin cancer. I have had two Basil's cut out and have had four MOHs for Squamous on my face. I thought the tumors would be from one of those but Mel! I was shocked as there have been no signs of it on me. It was nice to have a full scan as a base and determine how long it has been in my body. The bummer is when the radiologist reads the scan they are only looking in the area of concern as in my case lymph nodes and missed the spots on my liver.  Great! 

                          What treatment is your dad leaning to? 

                          Good luck with all,

                          Gary

                          • February 15, 2014 at 6:04 am
                          Bleeds
                          Participant

                            Hi Jerry,

                            I do not know. I know I do not have Del 13q or Del 17p and have been on a wait and see for the last 5.5 years. I will update my profile to give you a better clue to me.

                             

                            Thanks,

                            Gary

                            • February 15, 2014 at 6:04 am
                            Bleeds
                            Participant

                              Hi Jerry,

                              I do not know. I know I do not have Del 13q or Del 17p and have been on a wait and see for the last 5.5 years. I will update my profile to give you a better clue to me.

                               

                              Thanks,

                              Gary

                            • February 14, 2014 at 8:21 pm
                            JerryfromFauq
                            Participant

                              Gary, do you know if your CLL has the c-kit oncoprotein over expression or DNA mutation?  I know that Gleevec works tohelp controls ome types of CLL.  Though not FDA approved for melanoma, it Can be effective on those  of us that have the C-kit mutations, especially on exon 11.

                               

                               

                              • February 14, 2014 at 8:21 pm
                              JerryfromFauq
                              Participant

                                Gary, do you know if your CLL has the c-kit oncoprotein over expression or DNA mutation?  I know that Gleevec works tohelp controls ome types of CLL.  Though not FDA approved for melanoma, it Can be effective on those  of us that have the C-kit mutations, especially on exon 11.

                                 

                                 

                            Viewing 2 reply threads
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