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Recent Stage III(?) been lurking, have questions.
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Recent Stage III(?) been lurking, have questions.

› Forums › General Melanoma Community › Recent Stage III(?) been lurking, have questions.

  • Post
    • February 10, 2017 at 5:49 pm
    ToddG
    Participant

      Background:  Had a suspicious mole on the backside of my rt shoulder in August of 2016.  Wanted to go have it checked out as it was new ( i have a lot of moles) and abnormal.  I had seen a dermatologist 2 years prior to remove a couple of new growths on my forhead and top of my scalp, which I thought nothing of, especially in the way of melanoma.  Never heard back from them and I was too naive to call.  I'm guessing benign.  Well, due to our family's busy schedule (2 young kids in sports and hunting season coming up), I failed to schedule.  Lo and behold, after about three weeks, the mole disappeared!  Nothing to have removed now, I thought, and it was forgotten about.

      By mid October, I began to feel swelling in my rt armpit.  I am allergic to fire ants, and having battled them here in Texas, I knew it was a lymph node.  Still clueless about cancer, I made an appointment with my GP for Nov 3 after noticing no shrinkage in a weeks time.  The GP held of on refering me anywhere as he thought maybe I had a virus, telling me to come back in 10days if there was no change.  10 days later, he sends me for an ultrasound.  The ultrasound led to the biopsy on the next day.  On the eve of Thanksgiving, I was phoned by the on-call Dr.  He was very grim, giving me the diagnosis of Stage IV metastatic melanoma.

      PET scan showed lit up nodes from the mid rt side chest up to clavical and under rt arm.  Brain MRI was clean. BRAF mutation positive (after a loooooong delay from lab/insurance problems).  Started on Tafinlar the day before Christmas eve.  It was 2 more weeks before insurance approved and I was able to add Mekinist to my intake. High fevers, night sweats, a couple vomiting spells, wetting the bed, constipation, and general aches and pains soon followed.  By the middle of January, with the addition of prednisone, another anti nausea med, and ibuprofen, my body was getting used to everything. It was about then I had my second Onc appt.  He was surprised my swollen node was unchanged, but I had only had the Mek on board for just over a week.  Nothing else to report.

      Then, one morning I woke up with broken blood vessels in my left eye.  I sent in pictures, Dr said to report any other changes but not to worry, it was probably from straining.  The next week (last week), I developed several small, swollen nodules on both mid thighs in the shape of a horse shoe, not equal on either leg but similar.  They were like 6-8 marbles just under the skin and very painful.  Doc took me off the Taf/Mek for the week prior to yesterday's appointment.  Still surprised the axillary lymph had not reduced and concerned over the Erythema Nodusum (his diagnosis of my now disappearing thigh bumps (driven by another week of predisone), The Oncologist took me off Taf/Mek and started me on Zelboraf and Cotellic.  I had an EKG done in his office yesterday and will have a MUGA scan on Monday.  I heard the scheduler saying I needed the MUGA (heart pumping video) as a baseline for the cardiotoxic meds I would be taking.

       

      I researched but did not find much on the forum here about my new meds.  Did I use the wrong nomenclature?  Anyway, what can I expect from the new meds?  Are the new meds as effective as the Taf/Mek combo?  Why would the onc be concerned about the EN diagnosis, as it is basically harmless?  Any other input is very welcome.  I know I am a newbie here, but have learned quite a bit reading through post by my brothers and sisters here in the fight. 

      Stay strong, Keep your focus, and Fight On!

       

      ToddG

    Viewing 8 reply threads
    • Replies
        • February 10, 2017 at 6:11 pm
        cancersnewnormal
        Participant

          Hi Todd,

          Sorry you've had to join the club here. Hopefully someone with personal experience of this drug combo will have more input, but from what I found in a search, is that the Zelboraf/Cotellic combo for BRAF patients is a little newer pairing to the melanoma game than Taf/Mek. Cotellic was just FDA approved for use with Zelboraf in late 2015. There are some noted side effects with "heart problems that can lead to inadequate pumping of the blood"…. so a heart test is probably a smart precautionary move. However, MEK also carries potentially dangerous cardiac side effects as well. Here is a link to the drug combo press release from Nov 2015 with more info for you: https://www.gene.com/media/press-releases/14611/2015-11-10/fda-approves-genentechs-cotellic-cobimet

          On the "up" side of this mess…… should you have further issues with BRAF inhibitor medications, you still have several options with immunotherapy drugs as well. 

          Hang in there…… You're in the roughest patch of this mess right now… the early diagnosis and the "What the hell happens now?" stage.

          • February 10, 2017 at 6:11 pm
          cancersnewnormal
          Participant

            Hi Todd,

            Sorry you've had to join the club here. Hopefully someone with personal experience of this drug combo will have more input, but from what I found in a search, is that the Zelboraf/Cotellic combo for BRAF patients is a little newer pairing to the melanoma game than Taf/Mek. Cotellic was just FDA approved for use with Zelboraf in late 2015. There are some noted side effects with "heart problems that can lead to inadequate pumping of the blood"…. so a heart test is probably a smart precautionary move. However, MEK also carries potentially dangerous cardiac side effects as well. Here is a link to the drug combo press release from Nov 2015 with more info for you: https://www.gene.com/media/press-releases/14611/2015-11-10/fda-approves-genentechs-cotellic-cobimet

            On the "up" side of this mess…… should you have further issues with BRAF inhibitor medications, you still have several options with immunotherapy drugs as well. 

            Hang in there…… You're in the roughest patch of this mess right now… the early diagnosis and the "What the hell happens now?" stage.

              • February 10, 2017 at 10:46 pm
              ToddG
              Participant

                You're right!  What the hell happens now!  I have a surgery scheduled for Mar 8 where they would like to remove as much as possible, after the shrinkage, of course.  I don't think there has been enough time to shrink anything.  We shall see!  Thanks for the link!

                • February 10, 2017 at 10:46 pm
                ToddG
                Participant

                  You're right!  What the hell happens now!  I have a surgery scheduled for Mar 8 where they would like to remove as much as possible, after the shrinkage, of course.  I don't think there has been enough time to shrink anything.  We shall see!  Thanks for the link!

                  • February 10, 2017 at 10:46 pm
                  ToddG
                  Participant

                    You're right!  What the hell happens now!  I have a surgery scheduled for Mar 8 where they would like to remove as much as possible, after the shrinkage, of course.  I don't think there has been enough time to shrink anything.  We shall see!  Thanks for the link!

                  • February 10, 2017 at 6:11 pm
                  cancersnewnormal
                  Participant

                    Hi Todd,

                    Sorry you've had to join the club here. Hopefully someone with personal experience of this drug combo will have more input, but from what I found in a search, is that the Zelboraf/Cotellic combo for BRAF patients is a little newer pairing to the melanoma game than Taf/Mek. Cotellic was just FDA approved for use with Zelboraf in late 2015. There are some noted side effects with "heart problems that can lead to inadequate pumping of the blood"…. so a heart test is probably a smart precautionary move. However, MEK also carries potentially dangerous cardiac side effects as well. Here is a link to the drug combo press release from Nov 2015 with more info for you: https://www.gene.com/media/press-releases/14611/2015-11-10/fda-approves-genentechs-cotellic-cobimet

                    On the "up" side of this mess…… should you have further issues with BRAF inhibitor medications, you still have several options with immunotherapy drugs as well. 

                    Hang in there…… You're in the roughest patch of this mess right now… the early diagnosis and the "What the hell happens now?" stage.

                    • February 10, 2017 at 7:26 pm
                    Bubbles
                    Participant

                      I am posting a link to two articles that mention early studies (results are good!) of the two drugs you are now on – Zelboraf (Vemurafenib – a BRAF inhibitor) and Cotellic (Cobimetinib – a MEK inhibitor):

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=cotellic

                      Hope that helps. I wish you well.  Celeste

                        • February 10, 2017 at 7:45 pm
                        ed williams
                        Participant

                          Hi Celeste, it is nice to see how busy Dr. Weber and other Melanoma specialist are keeping those cute little "Mice" busy!!!! Just wanted to say thank you for all the great stuff that you post!!!! This little mouse just had his 81 treatment as part of checkmate 067 tial of Ipi/Nivo/ or combination. Best Wishes!!!Ed

                          • February 10, 2017 at 8:13 pm
                          Bubbles
                          Participant

                            Yes, I am glad the wizard and all the other Melanoma Big Dogs are busy!  Wouldn't it be great if they really did run out of patients for their trials!!!  If only!!  BUT – You rock, Edster!!!  You know we ratties would be nowhere without our best mousies!!!  Way to gut out that trial!  Hope you have a great weekend!  { I'll be sewing…tops…this time! :>) }

                            • February 10, 2017 at 8:13 pm
                            Bubbles
                            Participant

                              Yes, I am glad the wizard and all the other Melanoma Big Dogs are busy!  Wouldn't it be great if they really did run out of patients for their trials!!!  If only!!  BUT – You rock, Edster!!!  You know we ratties would be nowhere without our best mousies!!!  Way to gut out that trial!  Hope you have a great weekend!  { I'll be sewing…tops…this time! :>) }

                              • February 10, 2017 at 8:13 pm
                              Bubbles
                              Participant

                                Yes, I am glad the wizard and all the other Melanoma Big Dogs are busy!  Wouldn't it be great if they really did run out of patients for their trials!!!  If only!!  BUT – You rock, Edster!!!  You know we ratties would be nowhere without our best mousies!!!  Way to gut out that trial!  Hope you have a great weekend!  { I'll be sewing…tops…this time! :>) }

                                • February 10, 2017 at 10:49 pm
                                ToddG
                                Participant

                                  Ed, good luck!  Keep fighting and stay strong!

                                  • February 10, 2017 at 10:49 pm
                                  ToddG
                                  Participant

                                    Ed, good luck!  Keep fighting and stay strong!

                                    • February 10, 2017 at 10:49 pm
                                    ToddG
                                    Participant

                                      Ed, good luck!  Keep fighting and stay strong!

                                      • February 10, 2017 at 7:45 pm
                                      ed williams
                                      Participant

                                        Hi Celeste, it is nice to see how busy Dr. Weber and other Melanoma specialist are keeping those cute little "Mice" busy!!!! Just wanted to say thank you for all the great stuff that you post!!!! This little mouse just had his 81 treatment as part of checkmate 067 tial of Ipi/Nivo/ or combination. Best Wishes!!!Ed

                                        • February 10, 2017 at 7:45 pm
                                        ed williams
                                        Participant

                                          Hi Celeste, it is nice to see how busy Dr. Weber and other Melanoma specialist are keeping those cute little "Mice" busy!!!! Just wanted to say thank you for all the great stuff that you post!!!! This little mouse just had his 81 treatment as part of checkmate 067 tial of Ipi/Nivo/ or combination. Best Wishes!!!Ed

                                          • February 10, 2017 at 10:48 pm
                                          ToddG
                                          Participant

                                            I read through both of those, thank you!  I'm always finding the positive side, even though the negative mind creeps in once in a while.  This forum is full of hope, and I'm glad to be a part of it, under the circumstances!

                                            • February 10, 2017 at 10:48 pm
                                            ToddG
                                            Participant

                                              I read through both of those, thank you!  I'm always finding the positive side, even though the negative mind creeps in once in a while.  This forum is full of hope, and I'm glad to be a part of it, under the circumstances!

                                              • February 10, 2017 at 10:48 pm
                                              ToddG
                                              Participant

                                                I read through both of those, thank you!  I'm always finding the positive side, even though the negative mind creeps in once in a while.  This forum is full of hope, and I'm glad to be a part of it, under the circumstances!

                                              • February 10, 2017 at 7:26 pm
                                              Bubbles
                                              Participant

                                                I am posting a link to two articles that mention early studies (results are good!) of the two drugs you are now on – Zelboraf (Vemurafenib – a BRAF inhibitor) and Cotellic (Cobimetinib – a MEK inhibitor):

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=cotellic

                                                Hope that helps. I wish you well.  Celeste

                                                • February 10, 2017 at 7:26 pm
                                                Bubbles
                                                Participant

                                                  I am posting a link to two articles that mention early studies (results are good!) of the two drugs you are now on – Zelboraf (Vemurafenib – a BRAF inhibitor) and Cotellic (Cobimetinib – a MEK inhibitor):

                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=cotellic

                                                  Hope that helps. I wish you well.  Celeste

                                                  • February 11, 2017 at 4:44 am
                                                  UBContributor
                                                  Participant

                                                    Todd, you stay strong! You gonna make through this, and update us on your situation, because this is learning to rest of us too.

                                                     

                                                    • February 11, 2017 at 4:44 am
                                                    UBContributor
                                                    Participant

                                                      Todd, you stay strong! You gonna make through this, and update us on your situation, because this is learning to rest of us too.

                                                       

                                                      • February 11, 2017 at 4:44 am
                                                      UBContributor
                                                      Participant

                                                        Todd, you stay strong! You gonna make through this, and update us on your situation, because this is learning to rest of us too.

                                                         

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