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Update on me

Forums Cutaneous Melanoma Community Update on me

  • Post
    JenM
    Participant
      Hi all,
      Happy New Year to all! Have not been on in a long time…just wanted to give an update. Back in June 2010 found out melanoma spread to my left breast. Shopped around for a treatment either standard or clinical trial. Had decided on clinical trial and as I was getting worked up for that found out that I had 3 lesions in my brain (4mm, 4mm, & 8mm). Pretty devastated to say the least. Had Gamma Knife surgery and started chemo-Cisplatnium, Vinblastine & Temodar. Added on Nexavar several weeks later. Completed 4 cycles of the chemo and could not tolerate anymore-extreme nausea & vomiting. Lost at least 20 pounds…a lot for me..I only started @ about 120. Kept vomiting for weeks and weeks after completing chemo and Nexavar. Had a partial response to the treatment but that lasted for about 2 months Scan in October 2010 showed disease increased again in left breast and right axillary nodes. MRI of brain showed stable lesions. In a lot of pain….3 pain meds-morphine, lyrica and fentanyl patch.

      Started to shop around for a clinical trial and settled on GSK BRAF inhibitor at NYU in New York City w/ Dr. Anna Pavlick (love her!) definitely could not do anything too intense like IL2…..was too weak. Began trial drug on Nov.16. PET/CT prior to study showed spread of melanoma to many areas of skeletal system, innumerable pulmonary nodules, left pleural effusion, portoacaval lymph node, metastatic ascites and lesion in spleen. Within 2 weeks was off the morphine and lyrica. Generally just felt better by the end of Nov. In Dec, about 3 weeks into study started to be nauseous and vomit again. Doc got scared and ordered PET/CT from head to toe. My LDH was 1010. She did not like the number and had never seen anyone throw up on the drug ( although had to be reported by other sites b/c vomiting listed in the consent form).

      Surprise, surprise….scan result showed interval decrease of disease in left breast and right axillary nodes. Some pulmonary nodules decreased, some stable. Resolution of left pleural effusion. Complete resolution of metastatic ascites. Portoacaval lymph node not seen on this exam. Lesion in spleen was less seen. Some bony lesions did get larger, but some decreased and some remain the same. Overall….a good scan result just 3 weeks in. Also, I have many black cutaneous lesions covering the entire left breast. Majority of lesions are significantly either smaller or the black color of the lesions is less black. Still a lot to get through but looks much better. Nausea & vomiting resolved by adding on Reglan (anti-nausea drug)

      So, looks like I’m a responder….but for how long? That’s the billion dollar question! Stay tuned….

      Oh yeah for those on fentanyl patches or other type of narcotics, please never stop them all at once like I did ( in my defense, my pain doc did not tell me this and should have!). I have been going thru withdrawal symptoms which in a word are AWFUL. Back on the patch just to begin the weaning process. Praying for all of you out there fighting…..keep fighting.

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    • Replies
        lhaley
        Participant

          Jen,

          I hate to hear that you have progressed like this!  I hope the GSK  inhibitor is able to continue decreasing the mets for a long time. 

          Enjoy your children!!

          Linda

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          lhaley
          Participant

            Jen,

            I hate to hear that you have progressed like this!  I hope the GSK  inhibitor is able to continue decreasing the mets for a long time. 

            Enjoy your children!!

            Linda

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            Fen
            Participant

              Keep plugging away, Jen, fighting like hell. That's all we can do.  Fire your pain doc and get someone who will communicate better. Sheesh.      Sending prayers and positive vibes for you.

              fen

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              Fen
              Participant

                Keep plugging away, Jen, fighting like hell. That's all we can do.  Fire your pain doc and get someone who will communicate better. Sheesh.      Sending prayers and positive vibes for you.

                fen

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                King
                Participant

                  Jen,

                   

                  Thanks for the update.  You really have been battling.  Hoping and praying that you continue to respond and start feeling better.  I hate this disease and what it does to people.

                   

                  Stay Strong
                  King

                  Stage IV 7/05 Liver mets

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                  King
                  Participant

                    Jen,

                     

                    Thanks for the update.  You really have been battling.  Hoping and praying that you continue to respond and start feeling better.  I hate this disease and what it does to people.

                     

                    Stay Strong
                    King

                    Stage IV 7/05 Liver mets

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                    BethA in VA
                    Participant

                      Sounds like you have been thru too much.  I will pray for good responses and better reports.  Keep being positive & keep us updated.  Beth 3/B

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                      BethA in VA
                      Participant

                        Sounds like you have been thru too much.  I will pray for good responses and better reports.  Keep being positive & keep us updated.  Beth 3/B

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