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Opdivo, Yervoy and Zelboraf at the same time?

Forums General Melanoma Community Opdivo, Yervoy and Zelboraf at the same time?

  • Post
    KAF
    Participant

      Hi all

      Im very new here.  I was diagnosed with stage IV melanoma at the end of May.  It originated on my labia (I've had mole checks for years since the 90's but never had been checked there).  I'm scheduled for my 3rd dose of the Opdivo/Yervoy combo on Tuesday.  Had only a rash and fatigue after the first dose and have felt amazing after the 2nd dose (could be because after being hypothyroid my whole life I'm now hyperthyroid and the amount of energy I have is crazy).  Anyway, the one problem I'm having is that after having the tumor removed it's starting to reappear and now I have black dots all over both sides of my labia. My doc said that if I'm really uncomfortable that she could start me on zelvoraf next week.  She's concerned though about the side affects with all these drugs in my system. Has anyone else done zelboraf on top of the opdivo/yervoy?  If it's just the spreading I'm seeing should I just let it spread until my next scans?

      Thanks. Karen

       

       

       

    Viewing 8 reply threads
    • Replies
        geriakt
        Participant

          Hello Karen

          I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.

          Did you by chance use tanning beds? 

          Tom

          geriakt
          Participant

            Hello Karen

            I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.

            Did you by chance use tanning beds? 

            Tom

              KAF
              Participant

                Hi Tom,

                I did read the report about tanning beds. I used them maybe 10 times at most.  A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning.  Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid.  I don't even think sunscreen was even around in the mid 70's was it?  I used to love swimming and canoeing and got horrible burns multiple times.  I was even a lifeguard in college.  

                I'm hoping for positive results after the 4 doses.  Just seeing it spread makes me scared of what its doing on the inside.  It had spread to my liver but I hate to think its spreading to my lungs next.

                Karen

                geriakt
                Participant

                  When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.

                  Good luck to you

                  Tom

                  geriakt
                  Participant

                    When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.

                    Good luck to you

                    Tom

                    geriakt
                    Participant

                      When I was a kid at the most I would put on Hawaiian Tropic #4 oil. That does nothing but cook you. We can't correct the past for us but we can teach the younger ones to limit the sun, use sun scream, and completely avoid tanning beds and lights.

                      Good luck to you

                      Tom

                      KAF
                      Participant

                        Hi Tom,

                        I did read the report about tanning beds. I used them maybe 10 times at most.  A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning.  Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid.  I don't even think sunscreen was even around in the mid 70's was it?  I used to love swimming and canoeing and got horrible burns multiple times.  I was even a lifeguard in college.  

                        I'm hoping for positive results after the 4 doses.  Just seeing it spread makes me scared of what its doing on the inside.  It had spread to my liver but I hate to think its spreading to my lungs next.

                        Karen

                        KAF
                        Participant

                          Hi Tom,

                          I did read the report about tanning beds. I used them maybe 10 times at most.  A couple of times in college and a couple before my wedding/honeymoon mostly so I wouldn't get burned while travelling and so I could be outside more than 5 hours/day without burning.  Honestly I think my multiple mole removals (melanoma in situ, basal cell) were due to horrible burns I got as a kid.  I don't even think sunscreen was even around in the mid 70's was it?  I used to love swimming and canoeing and got horrible burns multiple times.  I was even a lifeguard in college.  

                          I'm hoping for positive results after the 4 doses.  Just seeing it spread makes me scared of what its doing on the inside.  It had spread to my liver but I hate to think its spreading to my lungs next.

                          Karen

                        geriakt
                        Participant

                          Hello Karen

                          I hate the idea of the shot gun approach when it comes to treatment drugs. I hope time will show positive effects for you. I have been on Opdivo for 44 weeks. So far so good for me but I am stage 3b.

                          Did you by chance use tanning beds? 

                          Tom

                          Kim K
                          Participant

                            Do you carry the B-raf mutation?  Just wondering since much more rare with mucosal mel.  If no, then B-raf won't do anything for your melanoma but increase side effects.

                            Kim K
                            Participant

                              Do you carry the B-raf mutation?  Just wondering since much more rare with mucosal mel.  If no, then B-raf won't do anything for your melanoma but increase side effects.

                              Kim K
                              Participant

                                Do you carry the B-raf mutation?  Just wondering since much more rare with mucosal mel.  If no, then B-raf won't do anything for your melanoma but increase side effects.

                                  KAF
                                  Participant

                                    Hi.  Yes, I tested positive for the BRAF mutation.  Its growing very quickly and I'm worried about it growing so fast before the opdivo/yervoy even get a chance to do its thing.  

                                    KAF
                                    Participant

                                      Hi.  Yes, I tested positive for the BRAF mutation.  Its growing very quickly and I'm worried about it growing so fast before the opdivo/yervoy even get a chance to do its thing.  

                                      KAF
                                      Participant

                                        Hi.  Yes, I tested positive for the BRAF mutation.  Its growing very quickly and I'm worried about it growing so fast before the opdivo/yervoy even get a chance to do its thing.  

                                      Maria C
                                      Participant

                                        Hi Karen,

                                        I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!

                                        I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…

                                        Hang in & know you're not alone!

                                        Maria C
                                        Participant

                                          Hi Karen,

                                          I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!

                                          I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…

                                          Hang in & know you're not alone!

                                          Maria C
                                          Participant

                                            Hi Karen,

                                            I have mucosal melanoma too and know how "lonely" the diagnosis is because most have the cutenous variety. MM is also highly aggressive so you need to punch back at it as hard as it is trying to knock you down. Don't let it!

                                            I would recommend asking your doctor your questions (very important ones) and then getting a couple more opinions. It takes awhile for ipi/nivo to work so keep at your 4 infusions and then go on the maintenance plan. I made the mistake of taking a pass on the maintenance regiment and things got worse. I don't believe MM patients should take any chances…

                                            Hang in & know you're not alone!

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