I am a stage IV warrior and I can offer some bits I have learned. First I am so proud of this room and what it does for us.
I have been in a Phase II/I study with BRAF/MEK, with my stage IV metastatic Mel, for 15 months now. Tumors vanished except for a pea sized critter in my lung. Someday, somehow I want to fight my way to NED like so many of you.
When I had the two diseases above, both from melanoma, the thing that worked was Crisco (the white stuff in the can) to relieve the itch. The expensive prescriptions failed me. Just take a handful and rub it everywhere below the neck. It will soak in and give relief as it moisturizes the skin. Moreover it is durable for about 10 hours. If you wait about an hour before you go to bed, it won’t even stain the sheets.
EN makes your legs look like a pair of tights loaded with door knobs. Then it turns to a multicolored bruise, and finally leaves. About a month for the whole cycle with me. It is our immune system getting ramped up again spoiling for a fight, and it came after me. My oncologist was surprised it hit me in the 13th month, instead of earlier, and the dermatologist was happy that my immune system was working so well. It goes after subcutaneous fat in the extremities and it made my lips look like I kissed a steam pipe. There is a lot of high excitement connected with fighting this disease.
