bettyr

Thank you both Lainy and Gavin for your kind words. I will definitely be back here and probably will be posting in another area of this discussion board soon. As today was not a good day for my nephew. This all started the week of Thanksgiving, 2014. His PCP thought it was kidney stones which is why they did a ct. Saw a mass on the spine instead. It’s bad enough that this ridiculous cancer is so rare, but he also gets an even rarer met location. The whole 9 month story is just not worth going into right now, but he’s been told that the trial he’s on and the other one that was under consideration are no longer options. Along with multiple other issues. The speed at which this cancer can do it’s damage is unbelievable. The ability of this cancer to not respond to chemo, is devastating. It is so vitally imperative that anyone with a cc diagnosis be treated by the right team of doctors. Those who have experience with this monster. I know you say that time and time again on this site. And it’s not just about treating the disease, you really need to have a care team that treats the whole person and the family and friends as this is not for the faint of heart. Or for the unprepared.