Hello to all,
I have metastatic leiomyosarcoma and have been on sorafenib for 7 months now. I have had many surgeries in the past including my kidney removed and 269 tumors from my lungs at a specialty lung hospital in Germany, this after I was told to be "inoperable" in the states. Initially with the sorafenib I had shrinkage of my residual 40 bilateral lung mets then stable disease. I am on meds for side effects of high blood pressure (lisinopril), relentless diarrhea (Lomotil every six hours), I have painful peeling fingers and feet which have improved as time goes on. I use Myoflex cream over the counter. It is a topical analgesic cream. Also,everyone should use lots of lotions on the hands and feet. I have found that if I gently remove the ever building calluses on my feet (side effect) with a foot stone (after soaking), the foot pain is lessened. I have lost a lot of weight and my hair changed colors (brown to blonde). I have lost hair in strategic areas of my body, I did not however get the notable rash. Many with LMS sarcoma are now responding to this drug. My daughter is on Imatenib (Gleevec)-same drug family, for her Desmoid tumor. I think the angiogenic targeted chemotherapy is a big breakthrough for cancers.
Best wishes to all, Kim OC