Hello everyone,
Its been a while and I thought I would update MPIP on how I am doing. I am an 8 year stage 3a (melanoma on lower calf, superficial spreading type) melanoma survivor. I am B-RAF negative. I am currently NED for 3 years 7 months after completing a clinical trial of ipilimumab (3mg/kg). I will have another PET scan this month, just saw my oncologist and did labs (exam and labs all normal) but he wants me to have PET scans every 6 months until I am 5 years NED. I'm ok with that!
I have done the following treatments: 11 months of low dose interferon injection (I was unable to tolerate the high dose after having two of them), 7 months of leukine injections, 5.5 weeks of radiation to my lower right leg, an isolated limb PERFUSION at Mass General, 6 weeks of radiation, and then finally a clinical trial of Ipi. yes my melanoma came back after every treatment except for ipi. I do not feel that any of my treatments were a "waste of time", I feel that every treeatment "bought" me more time until the ipi worked, and who knows what cumulative effect there may be?
I have moderate right leg lymphadema and wear a JOBST custom compression garment during waking hours, a Solaris night time compression garment, and I also have a Flexi-touch lymphadema pump that I do most nights (takes an hour). As I have below the knee edema also on my left leg due to cardiac meds that I take (I also had a heart attack two years ago, unlreated to cancer), I wear a double legged pantyhose style compression garment. Hotter than heck in the summer and not the best fashion statement, BUT it is a real conversation starter when I wear shorts or capris! I just naturally do on the spot education about skin cancer. I have alot of posto
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