Not sure if anyone still posts here? would love to join the bad ass melanoma warriors group if that is still available! my husband was diagnosed in january 2012 with Stage lV MM-primary never found, mets to lymph nodes, liver, spine hip.
He started on Zelboraf in Feb 2012. Amazing results, given his initial prognosis. Scans showed continued reduction in all tumors - onc has even used the word REMISSION!!
My 2 big concerns:
1-Seems he's one of the long-term PF patients at this point?! So scary, though...feel like the future is just so uncertain!! How are others who have been on this med for a while doing?
2-Definitely is coping with the side effects others have mentioned. Gets sunburned through the windshield of the car, serious joint pain, tiredness, super thick and painful spots on his hands & feet, hair loss, and bumps filled with stinky white stuff that itch & hurt all over his body, even his eyes!! also just had an abnormal EKG which means now we have to add a cardiologist to the mix.
Onc doesn't seem concerned with side effects, we should just be happy the Z is working. Agree to a point, but see that some others here have found relief from the skin issues w/prednisone. Worth bringing up to onc? Any input/replies would be super!!
Love and prayers to all the warriors here!