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Calynda

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      Calynda
      Participant

        This time last year I was supposed to go on ipi/nivo, but I had some complications coming down off my steroids I had been on during brain radiation.  I started Tafinlar/Mekenist and had a few elevated liver numbers.  We adjusted the doses and it’s worked great so far.  It’s seems to be getting less effective, but we knew when we started that it would have a maximum effective time…. I have a laser ablation scheduled Tuesday to take care of one lesion in my head that’s become problematic, but everything else around my body has improved in the drug combo.  We’re planning to switch me over to the combo immunotherapy after I heal up from surgery.

        Calynda
        Participant

          I was diagnosed as stage 3b in 2013.  We chose to monitor as the options available were interferon, clinical trial and advanced bio-chemo.

          I lapsed with my monitoring due to lack of funds, divorce and life in general.  I’m stage 4 now and have been doing great for the past year.  I’ve had a few complications, but will be starting immunotherapy by the end of the month (I’ve been taking an oral targeted therapy Tafinlar/Mekenist for the last year) and it’s done a good job with minimal side effects.

          I've had radiation on my brain… both targeted and whole brain.  I was tired and had a little radiation rash.  The biggest side effect from that was dry mouth.  I can’t comment on radiation effects in other areas though

          Calynda
          Participant

            Please don’t stop living the life you want out of fear of what might happen.  I was originally diagnosed with stage 3b while pregnant with my son (who will be 5 in May). I’m currently fighting stage 4 and recently got not so great news.  I was about to put an offer in on my first house.  After a day, I decided I still wanted to put the offer in.  I didn’t want to put things off because I got some bad news.  Unfortunately, someone else beat me to the house, so i will just keep trying.

            Calynda
            Participant

              Im interested in this too.  I have 3 Mets in my brain and my left side (arm, hand, foot and leg) have varying tingly/numbness/pain levels.  I’m considering applying for the medical marijuana card, but have similar reservations about its use and working.  Hopefully someone has some insight

              Calynda
              Participant

                Just an update.  I had my CT simulation and radiation prep appointment on Monday.  I have my PET scan on Friday morning at 8am.  

                I just got a call to schedule my targeted radiation appointment.  That is also scheduled for Friday.  It's at 3:15.  Friday will be a busy day.  I'm glad to be getting started.  

                Calynda
                Participant

                  Just an update.  I had my CT simulation and radiation prep appointment on Monday.  I have my PET scan on Friday morning at 8am.  

                  I just got a call to schedule my targeted radiation appointment.  That is also scheduled for Friday.  It's at 3:15.  Friday will be a busy day.  I'm glad to be getting started.  

                  Calynda
                  Participant

                    Just an update.  I had my CT simulation and radiation prep appointment on Monday.  I have my PET scan on Friday morning at 8am.  

                    I just got a call to schedule my targeted radiation appointment.  That is also scheduled for Friday.  It's at 3:15.  Friday will be a busy day.  I'm glad to be getting started.  

                    Calynda
                    Participant

                      Hi Kelly,  I know this is a pretty old post, but I was thinking about you and wanted to see if everything was still good for you. 

                      Calynda
                      Participant

                        Hi Kelly,  I know this is a pretty old post, but I was thinking about you and wanted to see if everything was still good for you. 

                        Calynda
                        Participant

                          Hi Kelly,  I know this is a pretty old post, but I was thinking about you and wanted to see if everything was still good for you. 

                          Calynda
                          Participant

                            My mom has been coming with me to everything.  For now, I can't drive so someone has to at least take me.  It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things.  We can both compartmentalize really well and process and act.  It's nice and helps keep things under control.  My dad takes a bit more handling.  It makes it harder. 

                            l did cut my hair off today.  I kinda like it, but I'm always changing my hair anyway.  

                            I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment.  The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.)  I feel like I've got the start of a good team and the more the merrier.

                            Calynda
                            Participant

                              My mom has been coming with me to everything.  For now, I can't drive so someone has to at least take me.  It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things.  We can both compartmentalize really well and process and act.  It's nice and helps keep things under control.  My dad takes a bit more handling.  It makes it harder. 

                              l did cut my hair off today.  I kinda like it, but I'm always changing my hair anyway.  

                              I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment.  The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.)  I feel like I've got the start of a good team and the more the merrier.

                              Calynda
                              Participant

                                My mom has been coming with me to everything.  For now, I can't drive so someone has to at least take me.  It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things.  We can both compartmentalize really well and process and act.  It's nice and helps keep things under control.  My dad takes a bit more handling.  It makes it harder. 

                                l did cut my hair off today.  I kinda like it, but I'm always changing my hair anyway.  

                                I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment.  The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.)  I feel like I've got the start of a good team and the more the merrier.

                                Calynda
                                Participant

                                  Also, my intro appointment today was with a radiation oncologist.  Dr Yoon at the cancer care center here in Decatur.  My medical oncologist is in the same building.  I talked a bit about how I'd like to have a melanoma specialist at least for consult and advising.  Potentially the one up in Chicago that the other member posted about last night.  That part of Chicago is only about 3 hours away and I have some friends up there I could stay with if necessary

                                  Calynda
                                  Participant

                                    Also, my intro appointment today was with a radiation oncologist.  Dr Yoon at the cancer care center here in Decatur.  My medical oncologist is in the same building.  I talked a bit about how I'd like to have a melanoma specialist at least for consult and advising.  Potentially the one up in Chicago that the other member posted about last night.  That part of Chicago is only about 3 hours away and I have some friends up there I could stay with if necessary

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