Clinical Trials, Side Effects and Me

I called Moffitt Cancer Center in Tampa this past Tuesday to make sure I was really on the list for the clinical trial. Sometimes doctors say things and there isn't good follow-through so I thought I'd call the clinical trial coordinator directly and make sure I was on her grid.

I've been in touch with a lovely nurse coordinator named Kathy ever since. She gave me her direct line and I can leave her messages, and ask questions. It's a pure delight. Kathy told me that I was on the list and that she would be contacting me for the next step. More waiting.

So, this is where we are. The clinical trial hasn't officially opened yet, as they have many steps in the eligibility/qualifying area before placing people in the trial. Kathy was asking me for my medical records in order to qualify me. She wanted all of my medical records. She asked me to go to MD Anderson's medical records department, get copies and just fax them on over. I told her I'd be happy to do so. However, after 2 1/2 years of treatment, my file is so thick that there just aren't enough hours in the day to stand at a fax machine. I also told her that I was confused because I thought that my medical records were already there with Dr. Minton's office, which was a condition before meeting with the doctor.

I was very nice of course, because I don't want them to kick me out because I'm not cooperating. I also know that medical records will charge me $1 a page to get the docs myself which I simply cannot afford-you should see that file! Kathy did email me this morning that Dr. Minton said she would give Kathy what she had and that she thinks all will be right with the administrative gods. She will let me know if they need anything else and then I'll fetch it.

Also in good faith, Kathy emailed me the 21 page consent form for this specific clinical trial. Now, we are not at that point yet, she just wanted me to have a heads up. There are at least 3 scheduled meetings/orientations with doctors before you make the final decision on joining the clinical trial and sign the consent form. The form is pretty daunting, of course, and there is an extensive list of possible side effects that were not mentioned to me before. There are apparently some risks with the eyes in which I could get pink eye -ewww-which is news to me. The doc just mentioned the rash, remember? I'd have to meet with an ophtamalogist (sp?) every time I go to Tampa for treatment. This is the part that makes me nervous. But it's all about information and I just don't have any so I'm trying not to freak myself out of the excitement of the clinical trial.

It's a big question mark--is this a list of side effects like the ones you hear on drug commercials that they put together just in case (may cause oily discharge or compulsive gambling) or is it high probability these things will actually occur? Obviously as a test subject I'm agreeing to report on the side effects I'm having so if I'm the one with oily discharge, that information would make it onto the published inserts of the medication. One could only hope to be so proud.

Apparently, they will schedule me to go to Tampa for some blood work and lab work before I can finish qualifying for this trial. Then we'll have those informational sessions with the doctors and get our questions answered. Hopefully this will all happen over the next two weeks because I'm off the chemo and those liver lesions are having a redneck party--definitely a kegger.

I'm just going to keep enjoying the chemo break of energy and keep praying that I'm heading in the right direction. Love to you all!

Muchos smoochos!