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Possibly stage 4 now
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Possibly stage 4 now

› Forums › General Melanoma Community › Possibly stage 4 now

  • Post
    • August 27, 2012 at 1:49 am
    KMT2003
    Participant
      Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news… I can’t do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma… What a shock for me and my husband.

      Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news… I can’t do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma… What a shock for me and my husband. The tears started flowing and I am not sure I heard anymore that she was telling us. I was scheduled to do an MRI locally tomorrow but it got rescheduled due to insurance not approving it yet. On Wednesday we will travel back to Moffitt to have the bone biopsy now and they are in the process of testing me for BRAF. Once we get all the results we will start a treatment plan. There are still some trials to do. It is just so overwhelming and scary. I am young with a wonderful husband and two small children so I’m scared to death that I won’t be around for them. I also forgot to mention that in area of the new areas I have been having a dull pain for the last two weeks but never thought it would be related….

      Kelly

    Viewing 17 reply threads
    • Replies
        • August 27, 2012 at 2:36 am
        LynnLuc
        Participant

          I am sorry you have progressed to stage 4. I am stage 4 as of June 2009 ( who knows how long before I was dx'ed) and I am in a Anti PD 1 trial at Moffitt ( since fall 2010). I have Dr. Jeffrey Weber the director of Moffitt's Comprehensive Melanoma Research Center and he is awesome. I have been NED for 2 years and 5 months.  Your case is always staffed with the tumor board and I know you are in good hands.. A couple people I know also have who Dr. K.  Be thankful they found it now and not later down the road. Is there a possibility of more radiation? I think Moffitt is the best place to be. If they don't have a trial that suits your needs they will hook you up with one that does.- Lynn

          • August 27, 2012 at 2:36 am
          LynnLuc
          Participant

            I am sorry you have progressed to stage 4. I am stage 4 as of June 2009 ( who knows how long before I was dx'ed) and I am in a Anti PD 1 trial at Moffitt ( since fall 2010). I have Dr. Jeffrey Weber the director of Moffitt's Comprehensive Melanoma Research Center and he is awesome. I have been NED for 2 years and 5 months.  Your case is always staffed with the tumor board and I know you are in good hands.. A couple people I know also have who Dr. K.  Be thankful they found it now and not later down the road. Is there a possibility of more radiation? I think Moffitt is the best place to be. If they don't have a trial that suits your needs they will hook you up with one that does.- Lynn

            • August 27, 2012 at 2:36 am
            LynnLuc
            Participant

              I am sorry you have progressed to stage 4. I am stage 4 as of June 2009 ( who knows how long before I was dx'ed) and I am in a Anti PD 1 trial at Moffitt ( since fall 2010). I have Dr. Jeffrey Weber the director of Moffitt's Comprehensive Melanoma Research Center and he is awesome. I have been NED for 2 years and 5 months.  Your case is always staffed with the tumor board and I know you are in good hands.. A couple people I know also have who Dr. K.  Be thankful they found it now and not later down the road. Is there a possibility of more radiation? I think Moffitt is the best place to be. If they don't have a trial that suits your needs they will hook you up with one that does.- Lynn

              • August 27, 2012 at 3:43 pm
              dellriol
              Participant

                I know how overwhelming that kind of news is.  I was cancer free for 7 yrs,then found out in February that I had mets to my brain and lung.  You have to stay as positive as possible. There are so many changes in melanoma treatment that I think the statistics are meaningless.  I wish you all the best, and pray for good news and strength for you and your husband.

                  • August 28, 2012 at 12:08 pm
                  JC
                  Participant

                    Wow, 7 years.  What was your original pathology of the primary lesion?

                    • August 28, 2012 at 12:08 pm
                    JC
                    Participant

                      Wow, 7 years.  What was your original pathology of the primary lesion?

                      • August 28, 2012 at 12:08 pm
                      JC
                      Participant

                        Wow, 7 years.  What was your original pathology of the primary lesion?

                        • August 29, 2012 at 1:01 am
                        KMT2003
                        Participant
                          I see you are an identical twin like me. Did you twin get any special tests done to see if she was melanoma free? If so, what tests? I worry about my twin but the dermatologist said she is fine…
                          • August 29, 2012 at 1:01 am
                          KMT2003
                          Participant
                            I see you are an identical twin like me. Did you twin get any special tests done to see if she was melanoma free? If so, what tests? I worry about my twin but the dermatologist said she is fine…
                            • August 29, 2012 at 1:01 am
                            KMT2003
                            Participant
                              I see you are an identical twin like me. Did you twin get any special tests done to see if she was melanoma free? If so, what tests? I worry about my twin but the dermatologist said she is fine…
                            • August 27, 2012 at 3:43 pm
                            dellriol
                            Participant

                              I know how overwhelming that kind of news is.  I was cancer free for 7 yrs,then found out in February that I had mets to my brain and lung.  You have to stay as positive as possible. There are so many changes in melanoma treatment that I think the statistics are meaningless.  I wish you all the best, and pray for good news and strength for you and your husband.

                              • August 27, 2012 at 3:43 pm
                              dellriol
                              Participant

                                I know how overwhelming that kind of news is.  I was cancer free for 7 yrs,then found out in February that I had mets to my brain and lung.  You have to stay as positive as possible. There are so many changes in melanoma treatment that I think the statistics are meaningless.  I wish you all the best, and pray for good news and strength for you and your husband.

                                • August 27, 2012 at 11:45 pm
                                Tina D
                                Participant

                                  Kelly,

                                  I am so very sorry you had to get this report. At this point it is important to remember two things, I think. One: You do not yet KNOW if this is indeed melanoma, until they complete the biopsy. Second: if it does turn out to be melanoma, as much as I pray that it does not – there are treatment options now, and several that are showing good success. I will be praying for you in these days to come ( that I KNOW will seem eternally long while you wait for a report) and will be watching for updates, all the while hoping they will bring good news.

                                  One day at a time,

                                  TIna

                                  • August 27, 2012 at 11:45 pm
                                  Tina D
                                  Participant

                                    Kelly,

                                    I am so very sorry you had to get this report. At this point it is important to remember two things, I think. One: You do not yet KNOW if this is indeed melanoma, until they complete the biopsy. Second: if it does turn out to be melanoma, as much as I pray that it does not – there are treatment options now, and several that are showing good success. I will be praying for you in these days to come ( that I KNOW will seem eternally long while you wait for a report) and will be watching for updates, all the while hoping they will bring good news.

                                    One day at a time,

                                    TIna

                                    • August 27, 2012 at 11:45 pm
                                    Tina D
                                    Participant

                                      Kelly,

                                      I am so very sorry you had to get this report. At this point it is important to remember two things, I think. One: You do not yet KNOW if this is indeed melanoma, until they complete the biopsy. Second: if it does turn out to be melanoma, as much as I pray that it does not – there are treatment options now, and several that are showing good success. I will be praying for you in these days to come ( that I KNOW will seem eternally long while you wait for a report) and will be watching for updates, all the while hoping they will bring good news.

                                      One day at a time,

                                      TIna

                                      • August 28, 2012 at 3:00 am
                                      King
                                      Participant

                                        Hi Kelly,

                                         

                                        You and your family have been in my thoughts and prayers.  Jim said he spoke with you briefly on the phone.  Sorry for the delay in having the MRI 🙁

                                        I was just  reading the other responses you've received.  I see that "Dellriol" whose name I don't recognize (might be new to the board) is also an identical twin.

                                        Please know we want to give you the support you need and share what knowledge and experience we have.

                                        Stay Strong

                                        King/Kathie

                                        Stage IV  7/05  Liver mets

                                        • August 28, 2012 at 3:00 am
                                        King
                                        Participant

                                          Hi Kelly,

                                           

                                          You and your family have been in my thoughts and prayers.  Jim said he spoke with you briefly on the phone.  Sorry for the delay in having the MRI 🙁

                                          I was just  reading the other responses you've received.  I see that "Dellriol" whose name I don't recognize (might be new to the board) is also an identical twin.

                                          Please know we want to give you the support you need and share what knowledge and experience we have.

                                          Stay Strong

                                          King/Kathie

                                          Stage IV  7/05  Liver mets

                                          • August 28, 2012 at 3:00 am
                                          King
                                          Participant

                                            Hi Kelly,

                                             

                                            You and your family have been in my thoughts and prayers.  Jim said he spoke with you briefly on the phone.  Sorry for the delay in having the MRI 🙁

                                            I was just  reading the other responses you've received.  I see that "Dellriol" whose name I don't recognize (might be new to the board) is also an identical twin.

                                            Please know we want to give you the support you need and share what knowledge and experience we have.

                                            Stay Strong

                                            King/Kathie

                                            Stage IV  7/05  Liver mets

                                            • August 28, 2012 at 9:33 pm
                                            Cate
                                            Participant

                                              Hi Kelly,  I'm so sorry to hear of your news but I wanted to tell you that they felt my father had melanoma in his bones and it turned out to be nothing.   You may have the same outcome!  Good luck with the biopsy!

                                              • August 28, 2012 at 9:33 pm
                                              Cate
                                              Participant

                                                Hi Kelly,  I'm so sorry to hear of your news but I wanted to tell you that they felt my father had melanoma in his bones and it turned out to be nothing.   You may have the same outcome!  Good luck with the biopsy!

                                                  • August 29, 2012 at 12:57 am
                                                  KMT2003
                                                  Participant
                                                    Cate,
                                                    I am sorry to see that your dad has passed. It is a beast of a disease. If you know mind sharing, what did it turn out to be since it wasn’t melanoma in the bones???
                                                    • August 29, 2012 at 12:57 am
                                                    KMT2003
                                                    Participant
                                                      Cate,
                                                      I am sorry to see that your dad has passed. It is a beast of a disease. If you know mind sharing, what did it turn out to be since it wasn’t melanoma in the bones???
                                                      • August 29, 2012 at 12:57 am
                                                      KMT2003
                                                      Participant
                                                        Cate,
                                                        I am sorry to see that your dad has passed. It is a beast of a disease. If you know mind sharing, what did it turn out to be since it wasn’t melanoma in the bones???
                                                      • August 28, 2012 at 9:33 pm
                                                      Cate
                                                      Participant

                                                        Hi Kelly,  I'm so sorry to hear of your news but I wanted to tell you that they felt my father had melanoma in his bones and it turned out to be nothing.   You may have the same outcome!  Good luck with the biopsy!

                                                        • August 29, 2012 at 12:54 am
                                                        KMT2003
                                                        Participant
                                                          Thank you everyone for your replies. I am keeping my fingers crossed that maybe it could be something else…tomorrow is the bone biopsy at Moffitt. Yesterday was the MRI so hopefully we will get some results soon!
                                                          • August 29, 2012 at 12:54 am
                                                          KMT2003
                                                          Participant
                                                            Thank you everyone for your replies. I am keeping my fingers crossed that maybe it could be something else…tomorrow is the bone biopsy at Moffitt. Yesterday was the MRI so hopefully we will get some results soon!
                                                            • August 29, 2012 at 12:54 am
                                                            KMT2003
                                                            Participant
                                                              Thank you everyone for your replies. I am keeping my fingers crossed that maybe it could be something else…tomorrow is the bone biopsy at Moffitt. Yesterday was the MRI so hopefully we will get some results soon!
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