Day -1

Today is my last day before a long stint, about a week, in SF which will involve several tests and blood work, the administration of both drugs, and then I should be on a weekly basis for the rest of the this first cycle of the trial.

Day -3 and beyond

So today I am on lead in Day -3.  It is a no drug day, and I'm feeling fine, a bit worn out from the traveling.  I returned from a round trip to SF yesterday, day -4, at 11:30 last night.  I won't be back on drug until Day 1, Friday, when I get both drugs AND a lot of tests.

Day -4 I had to be there so they could draw from PK's and PD's of the drug.  I napped most of the time, but it wasn't very restful with all the interruptions.  They take blood several times and do a bunch of EKG's watching the Qt interval which is a common side effect of this drug.  I didn't feel as fatigued by the drug, but I was napping anyway.

Day -5 and -6 were kind of rough.  I felt very fatigued and ended up sleeping a lot.  Also, the drugs seemed to have a laxative effect so I had to have a movement frequently and urgently.  Other than the fatigue I didn't have any problems with bleeding, fever, chills, or anything that they normally ask about.

Finally Part 2

I probably should go into detail about how much trouble I had getting on the most recent trial, and maybe I will in another post, but right now I'm just so happy to say I finally was able to meet all their silly requirements to participate and today is the second day I've been on trial...  I'm in the lead in phase now which means that I am taking the newest drug everyday for 4 days.  Once the actual trial starts, it is on a intermittent schedule.

The one thing I will say about getting on this trial is that if I was asked what hell was, I would say it's what a late stage oncology patient goes through; trying to get on a promising trial and repeatedly having something come up that is infuriatingly close but prevented by a bureaucratic entities strict adherence to protocol and guidelines.

A promising article

Anti-CD47
Anti-CD47
The thing I will say about this promising breakthrough/magic bullet is that I've seen at least one very promising target in oncology turn out to be just blah, and the latent side effects make it undesirable to me;  NY-ESO-1 anyone?!??!?  Still, I'm hopeful this anti-CD47 takes off and is a successful target for oncology, I'm convinced the immune system can be harnessed to beat this terrible affliction and it can durable.

Right on time

Unfortunately, Tuesday night I started to develop pain...I haven't gone to a Dr. because I'm sure  they'll just give me pain meds and I've got plenty of those and the more emergent issue, (hydronephrosis) can be relieved if the trial works, otherwise I'd need a stent placed.

This whole waiting bit may have gone on too long, but if they'll move quickly in SF, and I have good response on trial, it shouldn't be too bad.  I just hope they will have a slot open on the trial, which I'm lead to believe they will, and that they will get me started the same day, possibly.

Pain is in abdomen and back in the kidney region.  Abdominal pain is weird, feels like a pulled muscle or something.  Kidney pain is expected due to hydronephrosis and is the more sever.  If I don't move none of it bothers me, but if I have to bend or twist it's pretty bad.  Tylenol is working for the abdominal pain, but less so for the kidney.

Finally

Had some trouble getting a hold of SF again for this trial I want to get on.  I missed the single call back they made to me and hadn't gotten another after repeated attempts to reach them.  Sure, busy, but maybe also someone is out of the office, I don't know, but I'll give them the benefit of the doubt.

At this point I am scheduled to meet with the study lead again, but more importantly I will get a CT and should demonstrate that the disease has progressed which should finally allow me to get on study...

AND I found a neat tool to locate parking in the cities...
http://en.parkopedia.com/

Avemar, the first 2 days

I've take supplements before in my day, and never had any problems with them.  Avemar, sold as AWGE in the states, is no different.  At least, so far.  It's only been 2 days and my biggest complaint is the AWFUL taste.  It is supposed to have a "natural" orange flavor, and the first you smell of it is something close to orange, but once you drink it...it is the flavor of rotten orange mixed with yeast and who knows what else.  It makes sense that you get such a fermented flavor, I'll just have to find something to mask it better...