Before we left for MD Anderson, I was told that my blood pressure had to be under control to enter the trial, so it must read 140/80 or below, so they told me to revert to my prescribed dose of Atenonol once a day instead of the every other day I'd been doing. Unfortunately, over the last couple of months, this drug was casing my heart rate to drop and was making me feel poor when I took it.
I called the PA and MD Anderson and she prescribed lisinopril and I began taking that. I also bought a new blood pressure meter and started monitoring. the pressure was doing OK, but seemed to be climbing and was too high on Saturday morning and also Monday before taking my medicine and heading to the Clinic, so I was anxious but doing my best to trust God. When they took me in, the first reading was 146/80 so they switched to the larger cuff (that I need) and got a reading of 131/70. Praise God!
We then found that if there was any cancer found on my brain MRI done at Baptist that I would not have qualified for the trial. MD Anderson said they did receive the disk, but their radiology has a policy of not reading scans from outside, and they said they had not received the report along with the disk. So, we may have made the trip for nothing! They were later able to find it and there was no cancer found in my brain. Praise God yet again!
They were also supposed to have received the tissue samples from Baptist and verified the diagnosis. We were told they had received the samples, but hadn't gotten the pathology confirmed there. So, they had to go by the report from Baptist, so they had someone read the report and felt that they had sufficient detail to confirm the diagnosis of Sarcomatoid.
So, I had passed all the medical hurdles:
Blood test - Good (Doc said mine were better than his)
Urine - Good
Bone Scan - Negative
CT Scan - Showed only the known tumors on the kidney and small nodules in the lungs
Brain MRI - Negative.
I was scheduled to receive the two IV doses (Gemzar/Gemcitabine, Avastin/Bevacizumab) at 4:30 and they gave me a prescription for the Xeloda pill (Capecitabin) to fill at the pharmacy.
Unfortunately, the Pill is a prescription which fall under my prescription plan coverage (CVS Caremark), not my medical plan (United Health Care) that approved the clinical Trial and CVS Caremark denied my prescription.
UHC says they approved the trial for all three drugs, so they "should" pay for the pill as well, unfortunately, they coded it on their approval letter as the IV form of the drug, so MD Anderson pharmacy is concerned that when they are billed for the prescription it will automatically kick out as a prescription and won't be paid. They required us to sign responsibility for the $5700/Mon for the pill.
So, we will now have to pursue two paths, get UHC to provide in writing that they will cover the pill and/or get CVS to approve it even though it is a clinical trial drug not approved for my diagnosis.
I have now started my treatments and will be following the trial plan!
So, even though it was a very stressful day, we accomplished what we came here for.
Now, just need to drive back home with two boys who are very tired of being couped up!
