I for one am very interested in hearing how this goes. I will be asking my doctor about compassionate use in a week when I next see him.

I think "well protected" may be getting confused with "nothing to steal". This site doesn't ask for any valuable information and so is generally very safe to use. Of course that depends on what you post here ha. Can't get away from user error.

Avoiding FB over privacy fears is probably pointless. The real dangers out there? Credit cards. (I still use them) Government databases (no choice) Hospital databases (again - no choice) The real danger of FB is posting things you shouldn't post which can cost you friends or jobs. That however is us...

Like I explained on FB, I am not interested in cancer groups there. This forum serves that purpose. I like my FB to be more of a cancer free zone where I can escape the discussions at times. People from here are welcome to friend me on FB but I don't want to join any groups. I think Kenny's group se...

I suspect that prep dosage is less than an exact science. I take less than what they tell me to as I seem to be very sensitive to it.

The official time table is a decision by Dec 2015 so it hopefully will be sooner.

One thing I have learned both through my own experiences and from being on this board: Never simply trust your doctors. They are human. They are usually overworked. They make mistakes. They miss things. Check and double check everything they tell you or that they want to do. Of course, don't let the...

I spoke to Skypup several days ago and she indicated she needed a break from the forum. I hope she will be back but hard to say for sure.

Sorry you are having a bad day CR. What keeps me going is the hope that tomorrow may be a better one.

Some of the best advice I have been given has been from the NED members here and those who have lost their loved ones to this disease but still post. I will be forever grateful they have chosen to stay and share their accumulated experience with the rest of us. I also understand that one may never r...

Things have calmed down and I think may actually be better around here. I see signs that the mods as a whole are going to communicate more and I appreciate that and I think maybe we all also got a reminder in being respectful, patient, and reasonable. I am going to try to stay involved here though w...

We are in general Jay very easy to wind up ha.

Kenny - I think you were having a bad day. It happens. It just sort of snowballed. Hopefully some good things can come out of it like better communication when a mod feels something has crossed a line.

Kiwiinoz - no worries - Most Americans don't understand what Freedom of Speech actually means ha.

Guidelines would be nice that are uniformly applied. Yes, it seems there are older posts with completely inappropriate political content that should never have been allowed. That still doesn't make it a good idea to post the whole Duggar thing. It wasn't necessary or helpful. (And I barely even know...

The last time mine did that it was kidney stones but urine color was far from my only symptom. Hope you get this figured out.