two dr. appts down, one to go- now what? Updated

Update: Hi Everyone- thank you so much for your replies, suggestions, and prayers! I did write a short update Saturday, but a couple of people replied after that- guess they didn't see it down there. I had said that Dr. Fanta (Dr. Fantastic, as someone said) called me Saturday morning. I was supposed to have an appt w/ him this coming Tuesday. My insurance denied me to go to Dr. Lenz at USC (which I paid over $500 cash for), and they denied me seeing Dr. Fanta again (they said I already got a 2nd opinion from him w/in the last year). I could probably fight that & I will still try to get reimbursement for Dr. Lenz's appt. Dr. Fanta said that I might as well cancel my Tues. appt w/ him and that since he got all my recent medical info & the appt. notes from Dr. Lenz, we can just take care of things over the phone, fax, and email. What a guy! He is going to talk to Dr. Helton (my main onc) Monday a.m. to get him to write a letter to the insurance to explain why they need to pay for me to get Gemzar with Xeloda, even though it's not yet FDA approved for colorectal cancer. He thinks it will get approved & he's going to have all three oncs I've just dealt with sign the letter & he'll send the important good data on Gemzar (gemcitabine) to them as well. Dr. Fanta said he didn't want me to worry all weekend so that's why he was calling me Sat. a.m. He said "don't worry- we'll get this taken care of". So, I was able to relax and not think about it all weekend.
Now... I'm going to go help my 14 yr old w/ studying for her Mon. morning social studies test! Take care & I'll let you all know what happens with this. I'm thinking of you all too!!

Hi,

As you may remember, my PET/CT scan on 2/10 showed disease progression in my lungs, liver, and rectum. Three months before this time, I had stopped chemo when my November scan showed disease progression even while on Folfiri/Avastin. I then chose to start an offline treatment through Dr. Cantrell of Lovastatin and interferon. It worked well for several people, but not me.

This past week, I've set up appts. with my regular onc Dr. Helton, and Dr. Fanta,an onc I've consulted with before at UCSD and, for the first time, with Dr. Lenz at USC.
I had my appt. w/ my Dr. Helton on Wednesday. He said I should go for either of the clinical trials that Dr. Lenz or Dr. Fanta have to offer.
Then I had an appt w/ Dr. Lenz at USC yesterday, where I was really interested in pursuing the PARP inhibitor clinical trial and went up yesterday with hopes of this. First thing after Dr. Lenz walked in the room, he said "well, because you do not qualify for the PARP inhibitor trial, we will talk about what else we can do." Boom- I kind of felt like I was punched with that news right away, but had to keep my composure to keep up with everything else he started rattling off. Meeting him was an experience.
Anyhow- bottom line- even though I can't do the PARP inhibitor trial, there is a clinical trial that I would qualify for at USC (EPO 906 w/ Celebrex) BUT it is full and there's a waiting list of 18 people. I signed up for the waiting list, but don't know what the chances are and don't think I can just wait around for it. There are two other drug combos that show good promise and Dr. Lenz recommended for me to take (Gemzar with Xeloda or Pazapanip). The kicker is that only Xeloda is FDA approved & since the others aren't approved and there are no trials with them right now, I probably would never get insurance approval for them. Both Dr. Lenz and Dr. Helton told me that prior to Jan. 1, 2009, they could pretty much prescribe anything at all and insurance would cover it, but not anymore. Dr. Lenz said he knows that will only get even more restrictive with upcoming health care reforms. After asking me my income level, he told me I probably wouldn't qualify for help from the drug companies either.
So, I said, "well, then what should I do?" I also brought up the clinical trial that Dr. Fanta at UCSD thinks I should go on. That's called EZN-2208 with or without cetuximab. Cetuximab is Erbitux and anyone with kras mutations would be given it without the Erbitux. This EZN-2208 is a type of irinotecan/Camptosar that works just a bit differently and may have less side effects. Sounded good at first, but since I had disease progression on irinotecan before, I would worry to risk that this might not work either.
Dr. Lenz agreed with my concern and said I should not do it. That leaves me again with "well, then what should I do??" Due to the "diffuse, innumerable lung nodules", I am not a candidate for surgery, RFA, or cyberknife & I need to take some kind of chemo or other drug ASAP. I brought up "what about Folfox again?" That was what I took the first 6 months I was dx'd & my tumors shrunk and stopped lighting up on the PET on it. The issue for me, however, is that I had an allergic reaction to the oxaliplatin & had to go through desensitization each time for it so they are hesitant to try it again. Wednesday, Dr. Helton said he'd only consider that as a last choice. Well, I just might be at that last choice point. I was on the NCI website for clinical trials within 500 miles of where I live & I am only qualified for two of them- the same two that I already wrote about above. Maybe there will be more in the future or farther away. I'm going to see what my local options are first. I see Dr. Fanta at UCSD on Tuesday and will be talking more with Dr. Helton. Dr. Lenz said if I hear of any more trials, to email him and let him know. He also said to call and check every week to see if any more trials open up and to see if my name moves up the waiting list on the EPO 906 w/ Celebrex trial. I'll let you know within the week if I find out more.

Sorry if this is too detailed- *See update at top*
Lisa