Google cabo/xl-184 in yuaigongwudotcom (Chinese message board
It is a heart broken experience in my search for this Chinese message board, the same experience I had with kidney cancer chronicles a few days ago. Here is the brief summary:
-the message board I referred is exclusively for lung cancer with bone mets.
-they got xl-184 through mail orders (? from US, very expensive to me).
-majority of these posters presented themselves as patients' son or daughter.
-detail description of side effects and the effectiveness of xl-184 in dealing with bone pain, symptom improvement, being able to resume their daily activity, and shrinkage or disappearance of neck node/mass (neck lymph node mets). Overall experiences were very similar to what Chris' personal experience described on kidney cancer chronicles.
-many were asking for help/questioning on the dosage of xl-184. most of them adjusted the dosage (to as low as 20 mg) by themselves when side effects kicked in.
-It seems to me that many of these xl-184 users were on their own, with no up-to-date clinical follow up like bone scan, CT, MRI, PET scan....however, quite a few with serum CEA.
-From all the posts (2011 to 2013), more than half xl-184 users (? 80%) had experienced improvement on bone pain, shrinkage of neck node/mass, gaining energy/body weight, etc; most users experienced the improvement as quick as few days after starting treatment. very few discontinued because of side effects (mostly GI). some stay on xl-184 as long as 3 to 4 months. many users stated side effects tolerable and few even said xl-184 being the most tolerable among others.